tag:blogger.com,1999:blog-36052545437614462582019-01-21T16:29:11.878-05:00Wheelchair KamikazeThe Rants, Ruminations, and Reflections of a Mad MStery PatientThe Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comBlogger389125tag:blogger.com,1999:blog-3605254543761446258.post-46734811477673315432018-12-31T20:47:00.001-05:002019-01-01T02:53:13.875-05:00New Year’s Eve Through MS Eyes <img id="id_546a_7e84_6b53_9df1" src="https://lh3.googleusercontent.com/-OEl7DrsrfcQ/XCsbbe7jsXI/AAAAAAAAEI8/kmCISz_6cXIcG44F9sLgscx9H_mZXXycgCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 385px; height: auto; margin: 4px; float: right; display: block;"><div><i>(I first published this essay back in 2015, and it’s become my New Year’s tradition to post it again every January 1. I think the sentiments expressed can be appreciated by most people dealing with MS, especially those with the&nbsp;the progressive type. This last year has been pretty rough, but I hope to have some new essays written soon. I know I’ve said that before during the last few months, but this time I mean it! In the meantime, Happy New Year’s to all!)</i></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Back in in my healthy days, before MS, I always loved New Year’s Eve. While many of my fellow habitual night crawlers derided the night’s festivities as “amateur’s hour”, a time when those less accustomed to nocturnal hijinks were apt to get sloppy and make fools of themselves, I embraced the ringing in of the new year con mucho gusto. Never content with just one party for the duration of the night, my friends and I would go on a kind of New Year’s Eve tour, hitting four or five shindigs and nightclubs before heading home well after dawn on January 1. The sentimentality of the holiday, with its tacit promises of sins forgiven and futures bright with hope held me in its thrall. &nbsp;Though back then I seemed to live in a state of perpetual neurotic dissatisfaction, I also brimmed with expectations that bigger and brighter days were waiting just over the horizon. New Year’s Eve was the one night a year that this heady brew of emotions and expectations were codified into celebration, to be shared with friends and strangers alike.<br><br>For sure, my fondness for the holiday has its roots in my early childhood. My mom and dad divorced when I was three, and for several years after the split my mom and I lived with my grandmother and my unmarried aunt. On New Year’s Eve my young, single mom – who herself loved the nightlife – would head out with her friends into the NYC of the swinging 60s, while &nbsp;my grandmother, aunt, and I would watch Guy Lombardo and his Royal Canadians playing old timey big band hits for the well-heeled crowd at the Waldorf Astoria Hotel, broadcast live to our well worn black and white console TV. We didn’t have much money and lived in a building in the Bronx that was closer to a tenement than a high-rise, but our lack of means did nothing to diminish the excitement and expectations of the evening.<br><br>Though I was only four or five years old, on New Year’s Eve I was allowed to stay up till midnight to take part in a family tradition that stretched back decades. We didn’t have any fancy noisemakers or horns, but at the stroke of midnight, as confetti and balloons floated down on the well to do at the Waldorf and Guy Lombardo’s boys played “Auld Lang Syne”, my grandmother, aunt, and I grabbed sturdy old metal pots and pans. Then, using big spoons as drumsticks, we burst into the hallway of our apartment building, banging with joyous intensity on those dented and scarred cooking implements, creating a raucous racket and shouting at the top of our lungs “Happy New Year’s!” Most of the other residents of the building joined us in creating a jubilant and low rent but somehow defiant cacophony, delirious and intoxicating stuff for the very young me. I daresay that for those few moments we had a lot more fun than the swells at the Waldorf.<br><br>When I grew older, as a young adult I fully embraced the revelry of the holiday. I had quite a few memorable New Year’s Eves in my late teens through my mid 20s, from seeing the new wave band The Waitresses playing a show at 5 AM at the famous Peppermint Lounge to bumming cigarettes from a then barely known Howie Mandel at an MTV “after party” that rollicked on and on as if it might never end. I recall with great fondness stumbling out of a nightclub with a group of deliriously intoxicated friends and madly howling at the moon as the last seconds ticked away on one long ago year. As I transitioned into full adulthood, mixed in with raucous annual celebrations were the occasional intimate, more romantic New Year’s get-togethers with lovers and close friends. No matter the circumstances, though, the night never passed without champagne and good cheer, and always kindled within me expectations of bigger and better things to come.<br><br>Now, nearly 16 years since I was diagnosed with Primary Progressive MS, the night carries with it a much more complex and troublesome mix of emotions. For the first several years after my creeping paralysis struck, while I was still relatively able bodied, my wife and I would host New Year’s Eve parties, more sedate than my revelries of the past but good times nonetheless. Now, with my body increasingly compromised and my stamina waning, even a small gathering of friends can prove taxing. This New Year’s it was just my wife and me watching celebrations from around the world beamed into our living room in high definition on our big-screen TV, images so crisp and detailed it seemed as though I could step right into them. That is, if I could step.<br><br>Despite my best efforts to stay fixed in the moment, I soon found it impossible to watch millions of people celebrating without enviously contrasting their situation with my own. With nary a thought given to their tremendous good fortune at simply having limbs and senses intact, the televised multitudes danced and sang, drank and strutted, laughed and hugged and mingled and voiced exuberant expectations about a future brimming with possibilities. Lubricated by flowing booze and the magic of the night, all could convince themselves that the coming days held better fortunes then those&nbsp;which now belonged to history.<br><br>For the healthy masses, New Year’s Eve crystallizes the reality that the future is but a blank canvas, the images to be painted on it not predetermined but subject to the will of each individual. All but the most intransigent of difficulties will give way to effort, ingenuity, and discipline. Reality is but a construct of the human mind and the emotions it creates, and as such can be born anew once the self-defeating habits of the past are no longer allowed to dictate actions in the present. Not that these kinds of changes are easy, but with sound body and mind anything – anything – is possible. Sadly, it took my getting sick for me to fully understand this, but there is no greater truth.<br><br>And there I sat in a wheelchair – a wheelchair, goddamnit – trying my best to not begrudge the healthy, to vicariously share in at least some of the delirium, to laugh along with them and not let the sneaky tears that kept making their way to the corners of my eyes expose the turmoil that roiled within. There is indeed a reason they call progressive disease progressive. Physically, this last year has been a rough one, with old symptoms getting noticeably worse and new ones breaking the surface. Activities that could be accomplished with relative ease just a year ago are now at times tortuously difficult, and some of those that had been difficult have become damn near impossible. And by activities I don’t mean anything as devilishly complicated as walking or tying a shoe, but rather firmly gripping a fork, or struggling into a sweater, or on bad days, even just staying out of bed for more than four or five hours at a time.&nbsp;<br></span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Unlike those healthy New Year’s Eve revelers on TV, no amount of willpower or change of habits will arrest this bitter physical decline. Though for the most part my spirit stays strong, in the face of this insidious physical onslaught and its accompanying indignities I find it impossible to not at times give way to the weight of it all, having my breath taken away daily by the shocking realization that this is no dream that I can wake from, but instead a concrete reality in which I am being forced to watch myself slowly wither away. The mantra of “staying in the moment” does help to keep me grounded, but there are also times when the moment just sucks. Though I can and do fantasize about a future free from illness, my utter conviction to stare this bastard straight in the eyes lands such fantasies well into the realm of the far-fetched, right there alongside my old dreams of becoming the next Mick Jagger or Philip Roth.<br><br>New Year’s Eve is a time to look back and project forward, and for the healthy this shedding of the old and embracing of the new can be cathartic, if even just for a few hours. This New Year’s brought me no such respite, though, as a look back illuminated the losses suffered these past 12 months, and peering too deep into the future can be perilous, a glimpse at the dark at the end of the tunnel, a glance at an unthinkable void.&nbsp;<br><br>Yet I am not without hope. I keep myself immersed in the latest research and MS news, and though much of it is, quite frankly, garbage, there are approaches that do show promise. Perhaps I am delusional, but even through this morass of illness and increasing disability my resolve to not back down sometimes bends but doesn’t break, even as I acknowledge that merely stabilizing my disease state is at this point quite a longshot. But I know for a fact that sometimes longshots do come in. After all, I’m a guy who once won $15,000 in the Florida lottery, so I’m proof positive that you’ve got to be in it to win it.<br><br>So, as I sat there watching the partiers on TV, wrestling with my complicated and disconcerting mass of emotions, when the clock struck midnight I chugged some champagne and kissed my wife, while my inner five-year-old banged on pots and pans and screamed at the top of his lungs, “Happy New Year’s!”…</span></div></div>The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com8tag:blogger.com,1999:blog-3605254543761446258.post-12364638120067124752018-10-18T22:37:00.001-04:002018-12-29T17:07:45.826-05:00Welcome To The Twilight Zone (repost)<img id="id_77b1_cf06_550f_c7ac" src="https://lh3.googleusercontent.com/-DvQIyU3Cc_Q/W8lDdxXE1nI/AAAAAAAAEIc/mrtqLHMPBdIlFgCAwvKNSBeLqnTxMMg9QCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 307px; height: auto; margin: 4px; float: right; display: block;"><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i>(Yes, folks, I am still alive and kicking. Well, maybe not kicking - thank you MS - but alive, anyway. The last several months have been tough but I’m clawing my way&nbsp;back and plan on writing some new essays soon. In the meantime, here’s an old essay from 2013, in which I describe my time in The Twilight Zone– Really!)&nbsp;</i></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">A memory arrived in the mail the other day. It wasn’t unexpected, as I had ordered the item on eBay about a week earlier. My wife helped me open the package and as its contents emerged my eyes fell upon an object that seemed like a lost piece of myself, a relic long consigned to the mists of remembrance</span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">&nbsp;suddenly made real once again. There in my one working hand was a nearly 32-year-old copy of “The Twilight Zone” magazine, dated August, 1981, its cover as instantly familiar to me as the face of a rediscovered old friend.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>I opened the magazine and flipped through the first few pages until I found the publication’s masthead, the long column of titles and names of the people who worked to publish each issue. Scanning the list, my heart jumped a bit as my eyes landed on a name that I knew would be there but which somehow managed to surprise me nonetheless. There it was, under the names of the Editor and Managing Editor, just as I remembered: “Editorial Assistant: Marc Stecker”. Me. Suddenly I was 17 years old again, as excited to see my name in print as I was the first time around over three decades past, back when all of life was still in front of me and my current Twilight Zone like circumstances were beyond imagination.<br><br>I worked at The Twilight Zone magazine during the spring semester of my senior year of high school. Because I attended what is considered to be New York City’s best public high school, Stuyvesant High, the school's bulletin board listing afterschool jobs attracted more than the usual busboy and supermarket positions most kids worked at in those days to earn their weekend money. I was lucky enough to be the first to respond to a new posting looking for a proofreader to work at a publishing company uptown.<br><br>When I nervously arrived for my interview, I learned that the publication I was applying to work for was a magazine dedicated to The Twilight Zone, one of my all-time favorite TV shows. Back then, before the advent of cable television, when we had to make do with (gasp!) all of seven TV channels, The Twilight Zone was a syndicated staple of local non-network television broadcasts. I can’t speak for the rest of the country, but in New York City the show was televised seven days a week, usually with back-to-back half-hour episodes airing late at night in glorious black and white. Even before working on the magazine, I was already familiar with virtually every episode of The Twilight Zone, having viewed most of them numerous times. I was far from alone in this expertise; in those days before video games, my friends and I would sometimes while away our time retell</span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">ing the diabolically clever plot lines of Twilight Zone episodes to each other, even though we all knew most of the shows by heart.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>The original Twilight Zone series was produced in the late 50s and early 60s, the brainchild of creator Rod Serling, who introduced each episode dressed in a suit with skinny lapels and tie, a cigarette usually dangling from his fingers. The show featured off kilter tales with a very human touch that almost always ended with a mindbending twist, most episodes falling into the sci-fi/fantasy realm. In The Twilight Zone nothing was quite what it seemed, and you’d better be careful what you wished for, because wishes would often come true in unexpected and sometimes – but certainly not always – unpleasant ways. The episodes were deftly produced and directed, and were written by some of the top TV and film wordsmiths of the day. Several episodes starred actors who were already well known or who soon would be, including Robert Redford, Jack Klugman, Burgess Meredith, and Agnes Moorehead, to name a few.<br><br>Much to my surprise, after a brief interview with the magazine’s Managing Editor, I was hired on the spot. My daily tasks were devoted to assisting the very small staff of The Twilight Zone, which was primarily a two-person operation, with responsibilities split between an Editor and a Managing Editor, who were tucked away in a small office within a much large publishing company. The company's primary product was a second-tier “adult” magazine (yes, the kind featuring naked ladies – a definite perk as far as this 17-year-old was concerned), with a large staff devoted to publishing it and some sister publications.&nbsp;</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The Twilight Zone magazine itself turned out to be not some cheesy fanzine, but an impressive, very literate publication, featuring not only information about The Twilight Zone and other science fiction and fantasy movies and TV shows, but also original fiction in the Twilight Zone tradition. As such, every month it featured half a dozen or so new short stories by known and unknown writers, including some very famous authors such as Stephen King and Joyce Carol Oates, stories whose typewritten pages I not only got to lay hands on but help copy edit, making sure the typeset “galleys” for publication were free from mistakes such as misspellings and misplaced punctuation. For a kid with literary ambitions, this was intoxicating stuff.<br><br>As I sat in my wheelchair leafing through the yellowed pages of the old magazine, a steady stream of long dormant memories roused from hibernation. My job at the publishing house was my first foray into the everyday world of working adults, and I remember how surprised and amused I was at the controlled chaos around me. Though older and allegedly more mature, these folks seemed as full of foibles and quirks as my teenage friends and classmates. Did anybody ever really grow up?<br><br>One of the big bosses at the publishing company was a man with a hair-trigger temper&nbsp;</span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">who was plagued by physical tics that worsened the angrier he became. The editor of Twilight Zone was a fellow named T.E.D Klein (who would later become a not very prolific but well-respected horror author), a man in his mid-30s with a sharp mind and dry wit. I vividly remember the big boss flying into our office in a blind rage over some relatively minor transgression, screaming wildly as his tic ridden body increasingly took on a mind of its own, his anger manifested&nbsp;</span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">physically by his uncontrollably pounding himself rhythmically in the center of his chest with his right forearm every 10 seconds or so. I of course was horrified by this bizarre scene, but I could see T.E.D desperately trying to suppress his bemusement, his face weirdly puckered as he bit the inside of his lip in an attempt to not break down in uproarious laughter at the sight of the lunatic in front of him. So, this was life in the working world of adults. How strange.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Although I only worked at the magazine part-time for six months or so before going off to college, those days were brimming with teenage drama and angst, and my time at the magazine was a heady source of pride. Not only did I get to work with the hand typed manuscripts of famous authors, but I also took part in helping choose photos and illustrations for the magazine (developing the deep crush on one of the freelance illustrators in the process), met a variety of interesting people (including Carol Serling, Rod’s widow), and generally felt very much a part of the team.&nbsp;<br><br>Holding that old magazine, dating back to a time when I was about to embark on a defining new chapter of my own life story, I wistfully recalled that peculiar teenage mix of omnipotence and insecurity, the future rushing at me filled with prospects both exhilarating and terrifying. Life itself beckoned, and the preview reel that played in my mind featured visions of fame and fortune, romance and adventure, success and recognition, tempered liberally by fears of abject failure and disappointment. Despite occasional flashes of bravado, I was a bundle of neuroses back then, more Woody Allen than Mick Jagger, but still, my visions of a grand future seemed tantalizingly possible.<br><br>The notion that my life would be upended by a creeping paralysis certainly never entered my mind, even though I was an accomplished hypochondriac. I feared cancer, brain tumors, even leprosy, but the prospect of paralysis never really occurred to me. Now, with my disease continuing to progress, all of those teenage notions of what was to be are painfully bittersweet, the decades old magazine that sat in my lap their physical encapsulation. Viewed from certain angles, my current circumstances could be fodder for one of the stories contained within its pages, and it has often occurred to me that in some ways I could very well take my place as a character in a Twilight Zone episode.<br><br>I’m the wannabe writer who strayed from his path, his literary aspirations forever lingering as a painful reminder of dreams unfulfilled, until he contracted a dread disease and suddenly found his written ruminations reaching a worldwide audience through a medium that didn’t even exist when his dreams were first formed. I’m the lifelong neurotic and hypochondriac who spent countless hours and dollars on psychotherapy, whose inner demons were only put to rest through the realization of one of his greatest fears. I’m the disquieted seeker of wisdom always searching the arcane for glimmers of truth, only to grasp that which is truly important when forced to the sidelines of life, unable to apply the lessons learned to the existence he once led, the life interrupted.<br><br>I’ve written this before, but in this context I think it bears repeating. If a fortune teller had told the 17-year-old me that at age 49 I would live with my beautiful wife in a skyscraper next to Lincoln Center, that I’d sleep and wake to my own schedule, that my writings and photos would be read, viewed, and valued by people all around the world, and that I’d spend my days free from the constraints of having to work for a living, I’d have been ecstatic, convinced that all of my dreams would be realized. Of course, that seer would have left out one little detail, one slight wrinkle, an asterisk attached to the story that would make all the difference between dream and nightmare.<br><br>Yes, in The Twilight Zone you must be careful to read all of the fine print and consider every nuanced possibility. My life has seen me go from working at The Twilight Zone to living in my own private version of it, which in itself might make for an interesting episode. As Rod Serling might have said in an introduction to that episode, “Presented for your inspection, a man watching himself disappear, one side of his body paralyzed, and the other desperately trying to hold on. He finds himself oddly off-balance, his right leg immobile and his left firmly planted in The Twilight Zone…”&nbsp;<br><br>So, has this Twilight Zone life delivered it’s final twist, or might there be one more to come, a happier one in my future unwritten? One can only hope, and hope is the precious legal tender of The Twilight Zone.<br><br>Cue spooky music…&nbsp;<br><br><br><br>Here’s a classic old episode of The Twilight Zone, enjoy…</span> <div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><br><iframe src="https://www.youtube.com/embed/NHdJUDBYA0o" width="603" height="339" id="y_id_54e5_72b8_cd14_e337" frameborder="0" style="height: 339px; width: 603px;"></iframe><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div></div>The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com4tag:blogger.com,1999:blog-3605254543761446258.post-85356651165858112212018-08-19T04:23:00.001-04:002018-08-20T07:35:02.366-04:00Enough Already!<img id="id_ad72_3252_6e11_83ac" src="https://lh3.googleusercontent.com/-jifNi5LUbzo/W3ko-Rg0f8I/AAAAAAAAEHg/_H0rYOhpW-8Ne_b0rttDOMhcwEU7buSHQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 307px; height: auto; margin: 4px; float: right; display: block;"><br><div>Sorry, but this is yet another post – hopefully the last – about my ongoing struggles with kidney pain, catheters, and UTIs (Urinary Tract Infections). I've written three previous essays in this rather regrettable series, the first detailing my waking with horrendous pain in my right lower back, which led me to visit the emergency room twice in three days (<a href="http://www.wheelchairkamikaze.com/2018/06/everybody-must-get-stoned.html" id="id_9151_4338_a76a_bac1" target="_blank">click here</a>), the second delving into the myriad pleasures of having a catheter inserted into my wing wong (<a href="http://www.wheelchairkamikaze.com/2018/06/stoned-saga-continued.html" id="id_7848_1234_835d_cf69" target="_blank">click here</a>), and the third detailing my contracting a UTI (Unwanted Trickle Interference) as a result of that catheterization, including my belief that it may have been brought on by my neglecting to sufficiently protect myself against the evil eye (<a href="http://www.wheelchairkamikaze.com/2018/07/the-kinahurah-chronicles.html" id="id_1d72_bff5_45cc_3ebf" target="_blank">click here</a>).</div><div><br></div><div>Unfortunately, although I thought that last essay would be the end of this sad saga –&nbsp;given my new strategy of preempting any potential evil eye by pointing out that "Life Is a Terminal Illness" every time I say something even vaguely optimistic –&nbsp;I was nevertheless&nbsp;once again beset by The Whammy. On this occasion my wretched curse took&nbsp;the form of yet <i>another</i> UTI (Unpleasant Tinkle Insurrection). Yes, after fighting off the first infection with the help of two different antibiotics, I was shanghaied by another – or perhaps a continuation of the first – just about a week after I believed I was free and clear of the woes that had plagued me for the better part of two months.</div><div><br></div><div>Alas, I was stupendously wrong. Just as I felt I was beginning to regain strength to levels approaching those of my old normal – which is, albeit, a level far below optimal after 15 years with progressive MS – I awoke one day feeling feverish, and upon relieving myself felt that now all-too-familiar burning sensation in my Jolly Roger, an incendiary discomfort in my nether regions that led to an immediate phone call to my urologist. After I informed him of my profuse distress, he phoned in a prescription for yet more antibiotics and told me that if these did not have the desired effect&nbsp;I could very well be hospital bound for some high-powered intravenous antibiotics targeted directly at whatever pernicious bug had bedeviled me. The prospect of such a visit rose forth in&nbsp;me the vehement desire&nbsp;to unceremoniously regurgitate my previous night’s supper in some spectacular fashion.</div><div><br></div><div>Thus began another week spent in semi-delirium, as the infection and its antibiotic foe took up arms against each other, my body an increasingly beleaguered battlefield torn asunder by the ravages of microbial warfare. To my good fortune this conflict coincided with another taking place on a ballfield in Boston, as my beloved Red Sox took on their arch nemesis New York Yankees in a crucial four-game joust, providing my disease addled brain with some welcomed diversion. The Boston nine took all four contests against the evil incarnate Yankees, which I took to be a favorable portent for the insurrection being decided deep within my innards. These UTIs (Ungainly Tallywhacker Intruders) have shown themselves to be quite the troublesome beasties, far more debilitating than I ever could have imagined.</div><div><br></div><div>Finally, three or four days shy of fortnight the fevers and associated symptoms relented but left in their wake a malingering malaise, a weariness and heaviness of body and spirit that has left me spent beyond reason. I can only surmise that this is the product of a physical calculus whose equation includes multiple infections; several rounds of powerful antibiotics; the bodily wear and tear of having a garden hose inserted and then five days later wrenched from my who who dilly; and days on end of fevers, sweats, and tortured&nbsp;sleep.&nbsp;</div><div><br></div><div>Although the acute symptoms of this last infection subsided well over a week ago, it is only now that I have found the fortitude to put these words to paper, or, more correctly, to dictate them into my iPad whilst reclining in bed. When I venture out of bed to sit in my wheelchair I feel as if I might pass out after only an hour or so, sometimes less, like a Victorian lady prone to the vapors. Should this delicate condition persist much longer, I suppose a consult with yet another modern disciple of Hippocrates will be necessitated. I beseech the heavens above to intervene and make null and void this last option.</div><div><br></div><div>Egads, it appears that during my labors&nbsp;composing&nbsp;this essay I have become possessed by a ghostly essence aspiring to the literary stylings of&nbsp;Dickens or perhaps Melville, which I must now endeavor to shake loose from my earthly vessel. I best try reading something good and trashy, like some of my previous blog posts.</div><div><br></div><div>Anyway, yeah, in plain English the last few months have totally sucked. Bigly, I can tell you, sucked bigly. And, as you might by now have guessed, I am pretty much bored out of my gourd.&nbsp;Fingers crossed, these pages will soon be back to Wheelchair Kamikaze's usual mix of cynical looks at MS related research, self-indulgently introspective essays, and other such multiple sclerosis and Marc Stecker themed fiddle faddle. Enough already with the UTIs (Ultimately Tiresome Information), penis synonyms, and bellyaching. I'm sick of being sick, and just want to go back to being sick, if that makes any sense at all. Harrumph.</div><div><br></div><div>Kinahurah.</div><div><br></div><div>Life is a terminal illness.</div><div><br></div><div><br></div><div style="text-align: center;">————————————————————————————————————————-</div><div><br></div><div><br></div><div><br></div><div><img id="id_c2ac_3c93_d366_c6e9" src="https://lh3.googleusercontent.com/-dGPfQk2aYHg/W3oXFHLIfNI/AAAAAAAAEHw/YmvJiRKAB1gzHrZIHia4qdjNNrdSi_DTgCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 192px; height: auto; margin: 4px; float: left; display: block;"><br><br><p style="margin: 0px; font-stretch: normal; line-height: normal;">My good friend Mitch Sturgeon, founder of the MS themed blog Enjoying the Ride, has written a compelling memoir, also called Enjoying the Ride. Mitch's book recounts his life both before and after MS forever altered its course, and the story he weaves makes for a fascinating read. In his straightforward and episodic style, Mitch tells tales both entertaining and poignant, including those of his special relationship with his mom, a quadriplegic from the time Mitch was a small boy. On so many levels, echoes from the past ricochet into Mitch's experience with his own progressing disabilities, revealing subtle truths and even some family secrets along the way. I recommend this book wholeheartedly, so much so that I was honored to write its forward… Enjoying The Ride is available from Amazon in both electronic and paperback versions (<a href="https://www.amazon.com/Enjoying-Ride-Generations-Tragedy-Triumph-ebook/dp/B07FZP34MC/ref=sr_1_1?ie=UTF8&amp;qid=1534722795&amp;sr=8-1&amp;keywords=Enjoying+the+ride" id="id_c98c_7c62_dfdb_ac3d" target="_blank">click here</a>)…</p></div><div><font face="Courier"><br></font></div><div><br></div> The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com17tag:blogger.com,1999:blog-3605254543761446258.post-72639302858049338512018-07-22T22:06:00.000-04:002018-07-25T01:11:33.471-04:00The Kinahurah Chronicles<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;" id="id_a71a_fc7c_34e6_2679"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-S904wzOPa3I/W1UzRGIUL8I/AAAAAAAAEF4/A_x3W5JXGOg2AurmJy60eCm1DcnEQe5cgCLcBGAs/s1600/evileye.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1290" data-original-width="997" height="200" src="https://3.bp.blogspot.com/-S904wzOPa3I/W1UzRGIUL8I/AAAAAAAAEF4/A_x3W5JXGOg2AurmJy60eCm1DcnEQe5cgCLcBGAs/s200/evileye.jpg" width="153" id="id_8c2c_d8a3_7f83_4f53" style="width: 153px; height: auto;"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The hamsa, an ancient symbol<br>
used to ward off the evil eye.</td></tr>
</tbody></table>
I’m sure many Wheelchair Kamikaze readers have noticed that I haven’t put up a post in some time. To those who haven’t noticed I say, what’s up with that? Do you not wait for my every new entry with bated breath? Or, at the very least, with bad breath? As they say, bad breath is better than no breath at all…<br>
<br>
In any event, the reason I haven’t posted anything in quite a while is that the hellish saga that I recounted in my last two posts lives on. Just a quick recap: in the first those two posts (<a href="http://www.wheelchairkamikaze.com/2018/06/everybody-must-get-stoned.html" target="_blank">click here</a>) I wrote of waking up one morning with excruciating pain in my right kidney area, which subsequently led to two visits the emergency room. The second post (<a href="http://www.wheelchairkamikaze.com/2018/06/stoned-saga-continued.html" target="_blank">click here</a>) reported on my joyful experiences getting a garden hose stuck up my schlong, in the form of a catheter. At the end of that post, I said I was starting to feel better and was sure “I’m in recovery mode.” Stating something so overtly optimistic was apparently a big mistake. I almost certainly gave myself a kinahurah.<br>
<br>
For those uninitiated in the delights of Yiddish, the colorful language&nbsp;that once flourished among Eastern European Jews, a kinahurah is a word used to ward off a kind of jinx, an invitation to the universe or some jealous spell caster to hit you with a whammy whenever somebody (including yourself) says something even vaguely positive about you. <br>
<br>
In practice the kinahurah works like this: somebody says something optimistic about you, like “hopefully I’m in recovery mode” – my exact words in my last post – or “you’re so smart, I’m sure you’ll get that raise,” and it’s an open invitation to getting an evil eye from the envious or from a vindictive universe. In one of those twists of language, the word can also refer to such a curse itself.<br>
<br>
So, to ward off any potential torment, after even the faintest words of praise one quickly has to say “don’t give me (or him or her) a kinahurah,” or, simply, “kinahurah.” Growing up I spent a lot of time with my maternal grandmother, whose words were heavily sprinkled with Yiddish, and I think I heard the word kinahurah at least half a dozen times a day. I definitely should have known better than to say “hopefully I’m in recovery mode” without prefacing it by first writing “I don’t want to give myself a kinahurah, but…”.<br>
<br>
In any event, the kinahurah got me and got me good. When the catheter was removed from my putz (might as well continue with the Yiddish theme) I thought I was out of the woods. Little was I to know that there was a big fat kinahurah waiting for me, in the form of a vicious urinary tract infection. I have never experienced a UTI before, and though I’ve heard other MS patients talk of how terrible they can be, I really had no idea.<br>
<br>
For the first couple of days after the catheter was yanked out of my schmeckel it felt as though I was passing a parade of fire ants every time I urinated, but I figure that was just a side effect of getting a fire hose wrenched out of my schmuck. Soon enough, though, I started getting feverish, and all of my MS symptoms ramped up tremendously, leaving me almost completely debilitated. In all honesty, the following few weeks passed in what was some sort of a semi-delirium. A urine culture confirmed a UTI, and I was put on an antibiotic called Macrobid, which may have made me feel worse than the UTI itself. <br>
<br>
Macrobid is a drug used exclusively to treat urinary tract infections, and since I’m allergic to penicillin, there were very few other effective antibiotics left to choose. Another candidate was Cipro, but Cipro doesn’t mix well with tizanidine, a drug I take to combat horrendous muscle spasms I get in the night (have I ever mentioned that MS sucks?). I unwittingly took Cipro and tizanidine together earlier in this dreadful sequence of events, and the combination was like a date rape drug. I was out cold for the better part of a full day, and I’m pretty sure my wife took advantage of me – by watching the Hallmark Channel in peace, I think.<br>
<br>
After seven days of Macrobid, I remained so weak I could barely spend 15 minutes out of bed. Furthermore, it still felt like I was urinating razor blades and shards of glass. My urologist feared I might have developed a kidney infection, and I was put on Cipro despite the tizanidine problem. I reduced my dose of tizanidine dramatically, though, and things were tolerable.<br>
<br>
In addition to the antibiotics I tried every sort of natural remedy I could find, some recommended by my wonderful naturopath. These included drinking unsweetened cranberry juice, downing tablespoons of raw apple cider vinegar, and eating whole cloves of raw crushed garlic mixed with honey. Turns out that crushing a clove of garlic releases a compound known as Allicin, which is one of nature’s most potent antimicrobials (<a href="https://www.healthline.com/health/natural-antibiotics#honey" target="_blank">click here</a>), and raw honey also has antibiotic properties. Of course, raw garlic also wards off vampires, and, in the amounts I was eating, other human beings as well.<br>
<br>
Now, finally, after seven days of Macrobid, 10 days of Cipro, and all of the above natural remedies, I seem to be coming around. Kinahurah! Still far from where I was before the kidney pain started, but I’m no longer trapped in some horrible fever dream, sweating garlic byproducts by the pint into my bed sheets. <br>
<br>
I know many MS patients, especially females, suffer from recurrent UTIs and somehow manage to deal with these nasty infections, and all I can say is hats off to them. It’s long been said that females are the stronger gender, and there’s some proof.<br>
<br>
This whole miserable episode has left me puzzling how to avoid any hint of kinahurahs in the future. I know I won’t always remember to invoke a protective kinahurah every time I say something vaguely positive or hopeful, so there must be another way. After much thought, I do think I’ve hit upon a solution.<br>
<br>
I once asked a philosophically minded MS neurologist how it felt to be a doctor who has never cured any of his patients. His answer was surprising and succinct. He replied, “Well, life is a terminal illness, so what patient is ever really cured?”. No arguing with that, is there? A sobering thought, and one containing just enough existential angst&nbsp;to take the shine off of all the but the most optimistic statements, don’t you think?&nbsp;Maybe even enough to serve as a kind of kinahurah catch all.<br>
<br>
So, moving forward, my strategy to combat the kinahurah will be to end all conversations, correspondences, and other communications with the phrase “life is a terminal illness.” That should counteract even ambiguously positive statements that might attract the wrath of some jealous evil eye thrower. All of my emails and messages will now be signed “Regards, Marc Stecker, Life Is a Terminal Illness,” and my telephone conversations will end with “Goodbye, Life Is a Terminal Illness.” One can’t be too careful, now, can one?<br>
<br>
Hopefully, now that it feels like I’m urinating only lightly boiled water I’ll soon be back to posting essays on these pages more regularly. Kinahurah.<br>
<br>
Oh, apologies to all of those who sent get well notes and messages over the last several weeks, very few of which I was able to respond. I hope to be able to resume actively corresponding shortly. Kinahurah.<br>
<br>
Life is a terminal illness.<br>
<br>The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com31tag:blogger.com,1999:blog-3605254543761446258.post-82449828975138802062018-06-19T01:39:00.001-04:002018-06-19T12:22:09.379-04:00Stoned Saga, Continued…<img id="id_a026_a043_c517_f7e0" src="https://lh3.googleusercontent.com/-u6bqD6uy-t4/WyiXJfB2StI/AAAAAAAAEEM/3-6a9hWgQckNUcjMUVQHmxbhhLSt5TQWgCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 307px; height: auto; margin: 4px; float: right; display: block;"><span style="font-size: 12pt; font-family: Helvetica;">First, I'd like to thank all of the kind souls who sent me notes of support and advice since my last post, which detailed the recent medical tumult I was going through. I apologize for not replying to any of them, as it turns out the events recounted in my last essay where only opening stanzas of a longer composition. I'm afraid most of the notes and comments sent will have to be left without response, but please know they are appreciated beyond words. And now, on with the continuation of my woeful saga.…</span><br>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">When last I left you, dear readers, I told the tale of my supposed kidney stone and the pain and misery it caused (if you missed my last post,&nbsp;</span><a href="http://www.wheelchairkamikaze.com/2018/06/everybody-must-get-stoned.html" id="id_e0f1_dd5f_54e9_51c4" target="_blank">click here</a><span style="font-size: 12pt;">&nbsp;to catch up). Well, turns out that was only the beginning of the story…</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">After my visit to the ER two Sundays ago, catalyzed by searing, unbearable pain in my right lower back and flank which was diagnosed as most likely caused by a recently passed kidney stone, I went home and took to the bed, expecting the pain to diminish and eventually dissipate completely. Instead, the agony steadily grew worse, so much so that I started taking oxycodone to try to take the edge off. I HATE taking opioids, because in my experience they really don't diminish the pain but just get your head so fogged up that you're not really cognizant of it or anything else, for that matter. Since my mind is one of the last things that is still fully functional, I'm quite reticent to screw with it. But the pain in my right side was intense and unrelenting, so I hopped myself up on goofballs and tried to ride out the storm.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">By Tuesday afternoon, despite my being junked up on the legal equivalent of smack, the pain in my back and side had me writhing in my bed. I called the doctor and was told to get my sorry ass immediately back to the emergency room. Ugh.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Emergency rooms are surely included somewhere in Dante's Inferno, and normally I'd rather gouge my eyes out than have to deal with the ER and the minions of Satan who inhabit it. But the pain in my back far eclipsed any I would have engendered by said eye gouging, so off to the ER I went. Note: in actuality the people staffing emergency rooms are dedicated and hard-working, doing a job many others in the medical profession shun. And the ones I interacted with during both of my visits were actually quite nice and tried to make the experience as bearable as possible. But since they work in the bowels of hell, one can come to no conclusion other than that they must be demonoids. Very nice and dedicated demonoids, but underlings of the Prince of Darkness for sure.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Once back at the emergency room on Tuesday, all the tests previously done on Sunday were replicated – blood tests, urine analysis, and yet another CT scan. I wasn't thrilled about having another CT scan, since these expose you to a tremendous amount of radiation. In the case of abdominal CT scans, of which I had two in the space of two days, each exposes the patient to the equivalent radiation of 400 chest x-rays (</span><a href="https://www.fda.gov/Radiation-EmittingProducts/RadiationEmittingProductsandProcedures/MedicalImaging/MedicalX-Rays/ucm115329.htm" id="id_3fd_3658_69b8_c45" target="_blank">click here</a><span style="font-size: 12pt;">). So, I will be able to read by the glow of my own belly for the foreseeable future. On a positive note, my wife and I should see some significant savings on our electric bills.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">After all the tests were complete, no new significant findings were discovered except for the presence of a few white cells in my urine. This meant I might have a kidney infection, so cultures were ordered. Mercifully, while I was caught in the tendrils of Hades for hours and hours and hours the horrible pain I'd been experiencing for days started to subside, for no discernible reason. Not one to look a gift horse in the mouth, I asked no questions and was only grateful for the relief.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">I was scheduled to see a urologist the following morning, and when I showed up for the appointment he took one look at the CT scan reports and immediately noted that among the findings were that I had a very distended bladder. An ultrasound revealed that my bladder was indeed quite enlarged, so the urologist informed me that I was likely retaining urine and told me he needed to catheterize me in order to drain my bladder. Yikers!</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">By this time I was so worn down by the events of the previous four days and my mind so bedraggled by the after effects of pain and opioids that I could barely utter a peep of protest. Before I was quite fully aware of what was happening, a tube was being snaked down my trouser worm, yet another lovely experience bestowed upon me by multiple sclerosis, the gift that keeps on taking.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">After the catheter was inserted, out of my bladder poured forth at least three times the amount of urine that a human bladder should hold. Seems I had been retaining urine for quite some time, and this might have explained, according to the urologist, the pain emanating from my kidney. One problem with this theory is that, as I noted above, the pain had begun to noticeably dissipate the night before while I was in the ER, before the urine was drained from my bladder. Of course, the urologist stuck to his guns with his theory, as so many doctors are wont to do.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">The cavalcade of whimsy that started when the pain first struck on Saturday only continued to gain momentum when the urologist strongly recommended my having a catheter inserted again, this time to stay in place for about a week, in order to "give my bladder a rest ". Of course, this would mean I'd urinate into a bag attached to the catheter for that week, the prospect of which I was none too keen on. I doth protested vociferously, and negotiated him down to 36 hours, a figure neither of us was very happy about. He mentioned the prospect of my perhaps needing a catheter permanently, which started a conversation about quality versus quantity when it comes to life, which I won't go into here but should be fodder of a different kind of blog post.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Suffice it to say, I went home with a tube sticking out of my ukulele, a urine collection bag strapped to my leg. My angelic wife, who has been by my side through this entire twisted ordeal, took along with her a bigger collection bag to be used when I got home, in place of the much smaller leg bag. Yippee!</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">After he consulted with the urologist, my neurologist called me none too pleased about my unwillingness to be catheterized for the recommended full week, and a patient-doctor tiff ensued. After 14 years, my neuro and I have developed a genuine mutual affection, but this time around neither of us were all that happy with each other. I pointed out that I had been urinating noticeably less ever since my infusion of Rituxan about six weeks ago, which I blamed for my distended bladder. My neuro insisted the Rituxan could have no such effect. Having had extensive experience administering Rituxan, he'd have none of this. Regardless, he strongly urged that I do the catheter thing for more than 36 hours, a suggestion to which I rejected vehemently. Call me Mr. Cranky Pants.&nbsp;</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">After we got off the phone and I calmed down a bit, I reflected upon his advice and decided that he was likely correct. No sense playing with fire, and I certainly didn't want a reprise of the horrendous pain I'd experienced, so I spoke to the urologist and agreed that I would keep the catheter in through the weekend.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">And what a weekend! Having a tube shoved up your schmeckel for days on end is more fun than a night at the GiggleSnort Motel – not! My dear wife became quite adept at draining urine collection bags and switching between the leg bag and big mama bag, after a few false starts resulting in the dispersal of urine in places it shouldn't be dispersed. Since my right arm and hand are completely paralyzed and useless, and my left, while still functional, is getting increasingly less so, I was unfortunately of limited help with these various processes. I felt about as useful as a condom dispenser in a lesbian bar.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Finally, Monday rolled around and it was off to the urologist to get the catheter removed. Getting the tube yanked out of my tallywhacker, the prospect of which caused considerable anxiety, turned out not to be so terrible – hardly noticeable, in fact. I'll see the urologist again in 10 days, and hopefully between now and then things in the plumbing department will get back to what passes for normal in a multiple sclerosis patient. Over the last few days I've finally begun feeling better, so hopefully I'm in recovery mode.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"><br></span></p><p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;">The urologist informed me that the urine cultures turned out negative, so I didn't have a kidney infection. The CT scans never showed evidence of a kidney stone, and I remain unconvinced that my bloated bladder would result in such an acute pain focused on one specific area of my body. So the cause of my agony remains a mystery. As does the exact nature of my neurologic disease (my MS diagnosis has never been able to be confirmed), as well as the roots of my widespread endocrine dysfunctions, which continues to defy reasonable explanation.</span><span style="font-size: 12pt;"></span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Given the mass of mysteries surrounding my various debilitating medical conditions, I can only come to one logical conclusion: somebody somewhere has a voodoo doll of me and is using it as a pincushion, or maybe as a dog's chew toy. Of one thing I am certain – somebody put the Whammy on me.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">In that spirit, the song that has been running through my head nonstop this week, as I lay in bed with a tube sticking out of my stubby cudgel contemplating my slowly spiraling the drain over the last 15 years, has been this one. Written and performed by the one-of-a-kind Screamin’ Jay Hawkins, a man who is reliably reported to have fathered over 60 children, it expresses precisely the sentiment I've been feeling: someone put a spell on me, and not in a good way…</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p><p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><br><iframe src="https://www.youtube.com/embed/orNpH6iyokI" width="601" height="338" id="y_id_fb9e_62e6_325f_9514" frameborder="0" style="height: 338px; width: 601px;"></iframe><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p> The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com11tag:blogger.com,1999:blog-3605254543761446258.post-74553039192468255642018-06-11T02:43:00.001-04:002018-06-11T11:56:42.675-04:00Everybody Must Get Stoned<br><img id="id_8f6d_747_d97_55e9" src="https://lh3.googleusercontent.com/-V58maWshGcQ/Wx4Z_PrA4HI/AAAAAAAAEDc/LCTcx6CqqREwQx122oIGvfkgGQ17zuh2wCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 307px; height: auto; margin: 4px; float: right; display: block;"><p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">I was fully planning on writing a new blog post this weekend, filled with actionable MS information, wisdom, humor, pathos, and astonishing literary flourishes. Instead, I was sidelined by the WORST pain I've ever experienced in my life.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Woke up Saturday morning feeling relatively okay, but after a few minutes was hit with a horrendous stabbing pain radiating from the right side of my lower back. The pain&nbsp;</span><span style="font-size: 12pt;">was so intense that it pretty much paralyzed all the parts of me that aren't already paralyzed. I was rendered dazed, confused, and writhing in bed, and it took me several minutes to work up the</span><span style="font-size: 12pt;">&nbsp;strength to call out for my wife. She did a quick consultation with Dr. Google and came up with a likely culprit: kidney stones.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">I soon spoke with a family member who dealt with a kidney stone a few years ago, and she told me that there was really not much to be done other than to rest and wait for the stone to pass.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">So, I did just that – rested all day Saturday and Saturday night, and though the pain did start to subside I still felt pretty miserable when I went to sleep late Saturday night.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Woke up Sunday and after a short while&nbsp;was once again hit with a monstrous jolt of pain emanating from the same area in my right lower back. As soon as I could muster the wherewithal, I called my neurologist, as I no longer have a primary care physician. This is because the doctor who had been my PCP for 17 years decided to become a VIP physician, requiring patients to pay $3000 a year just for the privilege of being able to get an appointment with him – please, don't get me started. Turns out the world is filled with vampires, some of them hiding in plain sight.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">My neuro told me I should immediately go to the emergency room, which I did just as soon as Karen heroically managed to&nbsp;untangle me from the bedding, get me into some street clothes, and then into my wheelchair.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">At the hospital, the ER team did standard blood tests and urinalysis, as well as a CT scan. The blood tests came back relatively normal, the urinalysis turned up traces of blood, and the CT scan showed inflammation in my right kidney, but no kidney stone. I was told that I very likely had recently passed a kidney stone without knowing it, and the stone may have done some damage its way out.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Not sure I entirely buy that explanation since I feel really sick, as if I have an infection. Nevertheless, a recently passed kidney stone is the party line, at least for now.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">I did do an infusion of Rituxamab about six weeks ago, so I'm not sure that a standard blood test would actually show the typical signs of infection since my body has been wiped clean of B cells. The doctors in the ER didn't really seem to understand the potential significance&nbsp;of my having taken Rituxan, and appeared to be pretending to know what I was talking about when I told them I was on the drug. Just another example of&nbsp;our modern medical miracle machine showing that in large part it is made up of chicken wire and chewing gum</span><span style="font-size: 12pt;">.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">I'll be seeing an urologist early this week to try to get the situation clarified and resolved.</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Anyway, just wanted to let WK readers know that I'm still among the living, despite my not having put a new essay on the blog in over a month. I have some good ideas for new posts, and also a very long interview I conducted with a naturopathic doctor who works exclusively with MS patients that should prove to be enlightening once I get it transcribed. All of this is unfortunately on hold, however, until I start feeling a bit better. Hope you will bear with me…</span></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica; min-height: 13.8px;"><span style="font-size: 12pt;"></span><br></p>
<p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;">Since I associate almost everything that happens in my life with one song or another, here's the song that's been playing on a loop in my head ever since my wife uttered the words "kidney stone"…</span></p><p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><span style="font-size: 12pt;"><br></span></p><p style="margin: 0px; font-stretch: normal; font-size: 12px; line-height: normal; font-family: Helvetica;"><br><iframe src="https://www.youtube.com/embed/W9ksPa0e_P8" width="601" height="338" id="y_id_60ea_7399_36b1_18a0" frameborder="0" style="height: 338px; width: 601px;"></iframe><span style="font-size: 12pt;"><br></span></p> The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com22tag:blogger.com,1999:blog-3605254543761446258.post-88847897730451659972018-06-05T12:16:00.001-04:002018-06-05T12:20:08.243-04:00 Remembering Bobby Kennedy<div class="zemanta-img" sizcache="19" sizset="0" style="float: right; margin: 1em; width: 252px;"><font color="#000000"><span style="caret-color: rgb(0, 0, 0); -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><a href="http://commons.wikipedia.org/wiki/File:RFK_and_MLK_together.jpg" sizcache="18" sizset="0"><img alt="Attorney General Kennedy and Rev. Dr. Martin L..." src="http://upload.wikimedia.org/wikipedia/commons/thumb/b/b0/RFK_and_MLK_together.jpg/300px-RFK_and_MLK_together.jpg" height="232" width="242" id="id_2256_4ebb_a85f_aac3" style="border: currentcolor; display: block; width: 242px; height: auto;"></a><br><br></span></font><div class="zemanta-img-attribution" sizcache="17" sizset="1"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Image via&nbsp;<a href="http://commons.wikipedia.org/wiki/File:RFK_and_MLK_together.jpg">Wikipedia</a></span></div></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><em>(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted seven years ago, in 2011. Given the current ruinously divisive degraded and degrading&nbsp;political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important now than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this essay is as relevant today as it was 50 years ago and should be taken to heart by those of all political stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. Despite assertions otherwise, facts remain facts, lies remain lies, and ultimately the truth will win out. We are in desperate need of our own Bobby Kennedy.&nbsp;For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website –&nbsp;<a href="http://www.wheelchairkamikaze.com/2016/06/remembering-bobby-kennedy.html" target="_blank">click here</a>)</em><br><br>I am a man with few heroes.&nbsp;<br><br>It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set through their words and deeds. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 50 years ago today.&nbsp;<br><br>Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable gossip hungry media. Back then there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been realized. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against social injustice, fashioning himself into a champion for the weak and disenfranchised.&nbsp;<br><br>Robert Kennedy started his political career working in the office of the now justifiably vilified Senator Joseph McCarthy, who at the time was in the midst of his wretched early 1950s anti-Communist witchhunt, a hideous debacle which resulted in the destruction of the reputations and lives of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis.&nbsp;<br><br>After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968.&nbsp;<br><br>Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of America one can only imagine that the arc of history might very well have been much more benign than the reality that has ultimately come to pass. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss.&nbsp;<br><br>Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and likely unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, no asinine twitter tantrums, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination.&nbsp;<br><br>Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…<br><br></span><center><span style="text-align: start; width: 32px; height: 32px; position: absolute; z-index: 101; top: 1100px; left: 811px;"></span><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><iframe allowfullscreen="" frameborder="0" height="360" src="https://www.youtube.com/embed/GoKzCff8Zbs?rel=0" width="640" id="id_3e67_f10f_6ae2_2717"></iframe></span></div><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Rest in peace, Bobby Kennedy.</span></div></center><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span><div class="zemanta-pixie" style="height: 15px; margin-top: 10px;"><a class="zemanta-pixie-a" href="http://www.zemanta.com/?px" title="Enhanced by Zemanta" style="caret-color: rgb(0, 0, 0); -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img alt="Enhanced by Zemanta" class="zemanta-pixie-img" src="http://img.zemanta.com/zemified_h.png?x-id=140d73e8-5cd0-4c71-8527-0dab83efde7a" id="id_5c8b_5e9b_7580_9245" style="float: right; width: 148px; height: auto;"></font></a></div> The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com7tag:blogger.com,1999:blog-3605254543761446258.post-42257336134308540062018-05-22T22:52:00.001-04:002018-05-23T07:11:16.753-04:00(Not) Born This Way– Repost<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-lwqOTobNSNc/VyAqSgENBJI/AAAAAAAACYs/iozZxgfUnAsvJUrwMA8-5Nb0y-CCvWNOgCLcB/s1600/broken-mirror.jpg" imageanchor="1" style="text-align: start; clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><font color="#000000"><span style="caret-color: rgb(0, 0, 0); -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="248" src="https://1.bp.blogspot.com/-lwqOTobNSNc/VyAqSgENBJI/AAAAAAAACYs/iozZxgfUnAsvJUrwMA8-5Nb0y-CCvWNOgCLcB/s320/broken-mirror.jpg" width="320" id="id_e57c_ddc7_6596_9951" style="width: 320px; height: auto;"></span></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i>(I’ve been fighting the creeping cruds for the last couple of weeks and haven’t felt up to composing&nbsp;</i></span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i>a new essay. so, I’ll offer up a “Best of Wheelchair Kamikaze“. This composition generated a lot of response when it was first posted about two&nbsp;years ago, and I hope you find it worthwhile&nbsp;the second time around. Stay tuned for a new essay, coming just as&nbsp;soon as the cruds recede…)</i></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Later in May I’ll be marking the 13<sup>th</sup>&nbsp;anniversary of my official diagnosis with Multiple Sclerosis. Believe you me, the date won’t be punctuated by any festivities, but more likely with a shake of the head. Thirteen official years with this motherfracker and the reality of it is&nbsp;still a shock despite my mounting disabilities and the indignities that go with them. At this point my healthy days are becoming a distant memory, so much so that many of the details of my way-back-when life have taken on a dreamlike quality, as if they are no more than the ethereal whisps of a somnolent mind.<br><br>But no, indeed there was a time when I was healthy, and yes, I did actually do all of those things that are stored in my memory banks. Thing is, looking at me now, due to the unfortunate developments of the last 13 years nobody could ever guess at the experiences that shaped me. This certainly wasn't true when I was well, when my outward appearance most definitely reflected many of my life's experiences, my likes and dislikes, and, I think, something of the essence of my soul. Though I wasn't a peacock, I did take pride in my appearance, and often wore a rotating selection of the antique wristwatches and jewelry (some of the jewelry dating back to ancient times) that I passionately collected. Yes, I'll admit to a touch of vanity, but mostly my outward appearance was simply a natural extension of the person within.<br><br>One of my favorite pastimes is people watching, and part of what makes that activity so endlessly fascinating is imagining the life of each person spied, constructing an off-the-cuff&nbsp;narrative of their past, present and future. Writ large on many folks is an imprint of their lives, of dreams and aspirations filled or failed, of triumphs exulted and disappointments suffered. That sly looking older gent, snap brimmed hat worn at just the right&nbsp;angle and eyes all a twinkle certainly had his adventures, quite likely including&nbsp;a few too impolite to be told in public. Was he CIA or Cosa Nostra, and is there really a difference? That fashionably retro young lady, trying so desperately to come off cooler than a Frigidaire, masking not so long ago awkward teenage years and a mass of present insecurities roiling inside, her wannabe Audrey Hepburn exterior a veneer for the Olive Oil heart pumping within.<br><br>Most of us project who we have been and who we want to be through the image of ourselves we construct for the outside world, some more consciously than others but almost all having their tells. Much to my chagrin, though, my current wheelchair bound, physically decrepit state serves as the ultimate unwanted camouflage. Spastic, atrophied limbs and my mechanical means of ambulation paint a picture likely to overwhelm any I might otherwise want to project. When I first got the chair and was less disabled I made it a point to try to be the most fashionable gimp possible, choosing clothes and accoutrement that screamed “personality”. Now, though, forced by the ravages of my illness to wear garments picked far more for practicality than self-expression, my outward appearance speaks primarily of my medical predicament and not of the life that preceded it.<br><br>It’s strange how invisible one can feel when sitting in a hulking 350-pound mechanical monster. The simple fact is that most healthy folks don’t spend much time contemplating the person and personality sitting in the wheelchair, preferring to devote their thoughts instead to less morbid topics. Thinking too hard about the person in the wheelchair might provoke some rather unpleasant truths, including the disturbing reality that with a single stroke of bad luck that person in the wheelchair could be them. It’s much easier and less troubling to simply assume that the wheelchair people had just been born that way, or had in some other fashion materialized in their present state&nbsp;fully formed, like a pod person from The Invasion of the Body Snatchers.<br><br>Well, for the record, I’d like to state that I was definitely not born this way. This summer it will be eight years since I was forced into my first wheelchair, and about 11 years since I exhibited my first blatantly obvious outward signs of disability. The life I led before MS intruded upon it was varied and colorful, filled with experiences ranging from the ridiculous to the transcendent. And some that were transcendentally ridiculous.<br><br>At age 17 I worked for a dirty magazine, at 23 I was the lead singer of a punk rock band, at 30 a creative cog in a large buttoned down multinational corporation (yuck), and at 36 found myself heading up the DVD production department at one of the foremost music/TV/video production facilities in the world.&nbsp;<br><br>I played an important part in the making of over 300 mostly music related DVDs, and have a platinum record on my wall and a listing on IMDb.com to prove it. And even though that all sounds interesting in the telling, I never found much satisfaction in my work life.&nbsp;<br><br>I was a habitual night crawler, carousing past dawn more times than I can remember or count. To this day I’m rarely in bed before 3 AM, and strive to be blissfully ignorant that there are two 10 o’clocks in one day.<br><br>I suffered several broken hearts, but also broke a few along the way (sorry for that). I learned that although the faces and circumstances of each heartbreak differ, the heart tends to shatter along the same fault lines every time. And that after each heartbreak, which I neurotically nurtured, I was only as alone as I wanted to be. New romances magically appeared just as soon as I opened myself up to their possibility and stopped pining for loves lost.<br><br>I was almost murdered (twice), suffered a detached retina after hitting a really big guy in the fist with my eye, and once unceremoniously projectile vomited at my boss’s table during a raucous office Christmas party. Oops.<br><br>I drove fast cars way too fast (how else to drive them?), bet on fast horses that mostly turned out to be not quite fast enough, and fasted on Yom Kippur.<br><br>I shot video professionally while flying in vintage war planes, police helicopters, hot-air balloons, and even the Goodyear blimp, twice.<br><br>I jumped out of an airplane.<br><br>I came face-to-face with a 10 foot bull shark while snorkeling over a reef a few miles out in the Atlantic off the Florida Keys. I wish I could say that I faced the moment with steely resolve, but in plain fact I tried my best to run back to the boat that brought me there, proving once and for all that I am not the son of God and cannot walk on water. This did nothing to ingratiate me to my then girlfriend, left behind in my panicked wake. Please see the note on heartbreaks, above.<br><br>I won the lottery (for thousands, not millions), shot a hole-in-one, and came in first in a 500 player&nbsp;online poker tournament.<br><br>For a while I swam a mile every day, slicing through the waters in a meditative state stoked&nbsp;by the womb like environment of the pool and the repetitive physicality of the exercise. How I miss that.<br><br>I made friends with some very special people, relationships that matured beyond mere friendship to become family. These precious folks are an integral part of who I am and how I view the world. And I owe most of them long overdue phone calls.<br><br>I married an angel.&nbsp;<br><br>At times I've been down to my last dime and at others have been flush with cash, and learned that what my grandmother used to tell me about wealth when I was a kid is true: rich or poor, it’s nice to have money.<br><br>I could go on, but I’m sure you get the gist. I realize, too, that my becoming disabled has afforded me some extraordinary experiences that I otherwise certainly would’ve missed, and not all of them involve unpleasant medical procedures. Through these pages I have touched and been touched by people from all over the world. My MS “get out of work free” card gave me a reprieve from the working world, and allowed me the freedom to dust off parts of myself that had been left neglected for decades. I’ve made some very special new friends who are in one form or another members of the MS club. I owe most of them phone calls, too.<br><br>Despite the fact that I am, of course, still the sum of all of these parts, as my disabilities mount they increasingly dictate&nbsp;the persona the public at large sees when I venture outside my apartment. It’s impossible for them not to, as my wheelchair has no invisibility button and my withered and weakened limbs can’t be camouflaged by even the most snappy pull over shirts and elastic waisted pants. I know I'm not alone in these feelings, as I sense some of the same frustrations in the knowing glances and nods exchanged with other wheelchair users that I pass on the streets of New York. Funny thing is that some of the most interesting people I’ve ever met are fellow wheelchair jockeys, most of them imbued with a quiet wisdom and sense of the absurd accrued by enduring the foibles of our shared tribulations.&nbsp;<br><br>Indeed, most of us in wheelchairs were not born this way, and if that fact makes some members of the healthy world uncomfortable, well, sorry for that but get over it. Although a quick look at me may no longer reveal the kernel of who I am and where I’ve been, I'd be happy to share the lessons learned and laughs picked up along the way with anybody who would care to hear them. I am much more than this faulty and misshapen body; there's still a person in here filled with all the simplicities, complexities and idiosyncratic contradictions I've collected all these years. To find out what lurks within requires but one magic word. Hello.<br><br><br>Writing this essay brought to mind a wonderful song written and recorded by John Prine in 1971 that touches on many of these same themes, though in the context of old age rather than disability. It’s one of the most poignant songs I’ve ever heard…<br><br><br></span><center style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><iframe allowfullscreen="allowfullscreen" frameborder="0" height="360" src="https://www.youtube.com/embed/RfwGkplB_sY?rel=0" width="640" id="id_3b23_5ae_cc63_1662"></iframe></span></center> </div>The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com5tag:blogger.com,1999:blog-3605254543761446258.post-88945428995753907442018-04-16T23:10:00.002-04:002018-05-05T21:10:34.433-04:00An Uncomfortable Truth: No $ In Cures, Says Goldman Sachs<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-uJyzve4hh9E/WtVlMT9CkuI/AAAAAAAAD-8/mX49TEOg7A8IbGzhEuYfWhyX0KY3CLPoACLcBGAs/s1600/keep-calm-because-theres-no-cure.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="700" data-original-width="600" height="320" src="https://1.bp.blogspot.com/-uJyzve4hh9E/WtVlMT9CkuI/AAAAAAAAD-8/mX49TEOg7A8IbGzhEuYfWhyX0KY3CLPoACLcBGAs/s320/keep-calm-because-theres-no-cure.png" width="273" id="id_2e8f_bd95_5ada_ab7c" style="width: 273px; height: auto;"></a></div>
In a development more shocking than the capture of a live Bigfoot, a recent Goldman Sachs research report (click <a href="https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patients-a-sustainable-business-model.html" target="_blank">here</a> and <a href="https://gizmodo.com/goldman-sachs-analysts-question-whether-curing-patients-1825244673" target="_blank">here</a>) states in black-and-white what many have long suspected: curing diseases is not a viable business model for the companies that develop and manufacture drugs. Instead, drugs that turn terrible diseases into treatable illnesses which are kept under control by the perpetual use of medicines that sustain patients but don’t cure them have become marvels of modern capitalism.<br>
<br>
Perhaps unwittingly, the Goldman Sachs report confirms that our current medical research model is more crippled than I am. Over the past three or four decades, the interlocking mantras of “all government is bad government" and "private enterprise is the solution for everything," have led our society to hand the reins of medical research over to for-profit pharmaceutical, medical device, and biotech companies. Most of these companies are publicly traded, meaning their stock is available for trade on the world's stock markets.<br>
<br>
The problem with this formula is that publicly traded companies are mandated by law to be beholden to their stockholders, not the end users of their products. In the case of pharmaceutical and medical device companies, these end-users are sick people, many suffering from hideous diseases like multiple sclerosis. In the cold calculus of the free-market, the job of drug company executives is NOT to produce drugs that offer the best result for the patients who take them (like, say, cures). Instead, providing the best outcome for the companies’ stockholders – in the form of ever-increasing profits and ever appreciating stock prices – is the legal responsibility of these executives.<br>
<br>
In fact, the CEO of a drug company with an established and successful franchise of MS treatments could very well be engaged in illegal practices if they endorsed their company marketing a cure for the disease, which would destroy their existing tremendously profitable business model. In the parlance of the financial world, that executive would be in breach of his or her fiduciary responsibilities. In the parlance of the rest of the world, that executive would likely be given the heave-ho and could spend a good chunk of time in a Club Fed.<br>
<br>
Since finding cures for diseases like MS and cancer have eluded researchers for decades if not centuries, the recent advent of medicines that treat but don't cure have been heralded as modern miracles. The lack of cures has become the accepted status quo, despite the fact that in the days before medical research was dominated by for-profit concerns, dread diseases like polio, smallpox, and tuberculosis were wiped out through the efforts of government and academic researchers. Now, though, with the science of genetic therapies rapidly advancing, the prospect – or, in the eyes of Goldman Sachs, the problem – of curing diseases is growing tremendously, threatening to upend a business model that has become incredibly profitable. To take just one example, medicines that treat but don’t cure multiple sclerosis generated over $25 billion in revenues during the last year alone.<br>
<br>
As more and more disease-related genes are mapped and identified, the universe of illnesses that might benefit from gene therapy is expanding exponentially. Multiple sclerosis is one of those diseases, as it seems every few weeks a new set of genes are discovered that play a role in the MS disease process. The ultimate cure for MS may one day lie in altering the genes that initiate the cascade of failures that leads the body to destroy its own tissues. Ultimately, the genetic profile of individual patients may be used to tailor cures unique to their genetic makeup.<br>
<br>
In their research report released last week, Goldman Sachs – a company that is a central pillar of our financial system with a reach far beyond Wall Street – concludes that such genetic therapies represent a vital threat to those invested in companies involved in drug and medical device development and manufacturing. In a report entitled "The Genome Revolution", Goldman Sachs analysts ask, "is curing patients a sustainable business model?" While acknowledging the vast potential of genetic treatments, the report states “Such treatments offer a very different outlook with regard to recurring revenue versus chronic therapies. While this proposition carries tremendous value for patients and society, it could represent a challenge for genome medicine developers looking for sustained cash flow." Heaven forbid! The almighty dollar must rule all, patient and societal well-being be damned.<br>
<br>
The report goes on to make several recommendations for addressing the looming financial threat of curing rather than treating diseases, including that companies ignore rare diseases whose small patient pools would make any cures prohibitively expensive, and also that they avoid curing infectious diseases because "… curing patients also decreases the number of carriers able to transmit the virus to new patients", which would, of course, be terrible for business. The report cites the example of Gilead Sciences, which developed a cure for hepatitis C several years ago (click <a href="https://www.marketwatch.com/story/gilead-cured-hepatitis-c-thats-become-its-biggest-problem-2017-02-08" target="_blank">here</a>), but has seen its profits plummet as the population of hepatitis C patients shrinks thanks to the success of Gilead's medication. As a result, the company’s stock value has suffered. More proof that no good deed goes unpunished.<br>
<br>
Folks, this Goldman Sachs research paper states in black-and-white what to many has been long apparent but difficult to fathom: there is very little incentive for pharmaceutical companies to research and develop cures for diseases when marketing treatments that transform patients into customers for life is an immensely profitable business model. Those of us suffering from terrible conditions like multiple sclerosis must recognize that hoping for a cure from such entities is akin to hoping that the Easter Bunny hops into your local MS clinic and drops off a cure delicately encased in a colorfully decorated egg.<br>
<br>
What is the solution to this situation? Well, how about putting a small tax on pharmaceutical company profits, the proceeds of which could be funneled exclusively into publicly funded medical research explicitly targeted at finding the cause and cure of currently intractable diseases. If a tax of 4% were placed on MS medications, which, as stated previously, generated $25 billion in revenues last year, a nifty $1 billion could have gone to fund independent researchers in the search for a cure for the disease. Would it place an undue hardship on MS drug manufacturers if last year’s revenues totaled $24 billion rather than $25 billion? Let’s not forget, pharmaceutical companies are granted extremely long patents on their products and don’t face much in the way of free-market competition. It’s no accident that every MS medication is priced between $60,000-$85,000, despite the fact that some of them have been on the market for more than 20 years.<br>
<br>
Yes, I am aware that any talk of increased taxes is anathema to ideologically driven politicians and those who vote for them, but if we are to find our way out of a status quo that sees treating but not curing as perfectly acceptable, some radical changes need to be made. The current state of our medical research model has been corrupted by the siren song of blockbuster drugs, the profits from which are astronomical. As a society, we must reckon with the following question: Are profits more important than patients? Seems to me that in a country where “Life, Liberty, and The Pursuit of Happiness” are held as sacred, the answer should be self-evident. It’s tough to enjoy our inalienable rights while plagued with horrible illness. Will the incessant drive for ever-increasing economic gain dictate the future of medicine, or will we as a society finally stand up and say, “Enough!”The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com42tag:blogger.com,1999:blog-3605254543761446258.post-13329848844084940852018-03-25T21:58:00.000-04:002018-03-25T22:06:25.094-04:00First Annual Progressive MS Day – Wednesday, March 28, 2018<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-cpvT5Nw0B8U/WrhREIqBUNI/AAAAAAAAD9A/1wn0wmO8nwk7nAN0qxcmgu3U3M1O53PdQCLcBGAs/s1600/primary-progressive-multiple-sclerosis.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="506" data-original-width="1500" height="133" src="https://4.bp.blogspot.com/-cpvT5Nw0B8U/WrhREIqBUNI/AAAAAAAAD9A/1wn0wmO8nwk7nAN0qxcmgu3U3M1O53PdQCLcBGAs/s400/primary-progressive-multiple-sclerosis.jpg" width="400" /></a></div>
Okay, all of my fellow progressive MSers, we finally have a day to call our own! This Wednesday, March 28, 2018, will be the first ever Progressive MS Day, a time to draw the world’s attention to this most debilitating form of the scourge that is multiple sclerosis.<br />
<br />
As most of you already know, the majority of MSers (approximately 85%) are stricken with the relapsing-remitting form of the disease (RRMS) which is, of course, no picnic itself. Despite the advent of immunosuppressive drugs that effectively reduce relapse rates and the formation of new lesions in relapsing patients – medicines that carry with them laundry lists of serious and potentially fatal side effects – many of these patients may eventually transition to a progressive form of the disease, known as secondary progressive MS (SPMS). This stage of the disease sees patients no longer experiencing relapses and remissions, but instead a slow and steady decline in physical and mental functioning. Though there are currently over a dozen drugs approved to treat RRMS, there is only one approved to treat SPMS.<br />
<br />
A minority of MSers (about 10%-15%) start off with progressive disease. This form of the disease is known as primary progressive MS (PPMS) and is considered the most challenging type of MS to treat. Currently, there is only one approved drug for the treatment of PPMS, and its effect on this debilitating monster is relatively modest, slowing down the progression of disability by about 25% in some patients.<br />
<br />
Given this backdrop, it’s high time that the public is made aware of the ugly side of MS, the side which doesn’t have patients Dancing with the Stars or climbing Mount Everest. Progressive MS Day will offer our community a chance to draw attention to this particularly daunting form of MS, and by doing so hopefully draw resources towards treating and ultimately conquering it. Several states are expected to officially recognize Progressive MS Day, along with most MS patient advocacy groups. It is expected that this first Annual Progressive MS Day will grow in scope in years to come, but this year the event will be staged primarily in the virtual world of the Internet. Baby steps, folks, for those of us who can take any steps at all.<br />
<br />
Progressive MS Day has been kick-started by the drug company Genentech, which manufactures and markets Ocrevus, the only drug currently approved by the FDA for the treatment of progressive MS. Yes, it’s not like me to do any promotion on behalf of the drug companies, and I have written several lengthy articles on Ocrevus and the issues surrounding it (click <a href="http://www.wheelchairkamikaze.com/2016/03/ocrelizumab-ppms-trial-data-released.html" target="_blank">here</a> and <a href="http://www.wheelchairkamikaze.com/2017/01/ocrelizumab-commentary-possible.html" target="_blank">here</a>). But, just like politics, crippling diseases can make for strange bedfellows, and the idea of a Progressive MS Day seems pretty good to me regardless of where it was conceived. As patients and their loved ones struggling with this illness, let’s take hold of this day and make it our own.<br />
<br />
So, what can you do to help spread the word? Well, you can start by using the fancy-schmancy Progressive MS Day Facebook frame on your Facebook profile picture. I must admit, being an avowed Facebook hater, I had no idea what a Facebook frame was, but I just managed to add it to my profile pic and I think it’s quite nifty indeed. Please follow the instructions on the below graphic to add the frame to your own profile pic, and it’ll be like we have all revealed ourselves to be members of one of the least influential secret societies on the planet.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-bS6jYkkIql8/WrhNIIShpDI/AAAAAAAAD84/OMoxfnpl9xwv0IE2I5mjKEOZLmaLCMqlQCEwYBhgL/s1600/progressive%2BMS%2Bframe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="627" data-original-width="1200" height="331" src="https://2.bp.blogspot.com/-bS6jYkkIql8/WrhNIIShpDI/AAAAAAAAD84/OMoxfnpl9xwv0IE2I5mjKEOZLmaLCMqlQCEwYBhgL/s640/progressive%2BMS%2Bframe.jpg" width="640" /></a></div>
<br />
In addition, please use the hashtag #ProgressiveMSDay on your social media posts regarding the event. That way, nefarious groups like the Russian intelligence services and Cambridge Analytica will be able to forever tag you as a person with a crippling illness.<br />
<br />
Just to add my own Wheelchair Kamikaze twist to the day, I am requiring, with absolutely no exceptions, that everybody who reads this post compose a Progressive MS haiku and post it in the comments section of this blog or on my Facebook page, if that’s how you reached this blog post. If you cheat and don’t compose a haiku, I swear I will hunt you down, sneak up on you, and when you least expect it shout “Boogie Boogie Boogie” at you. Believe me, writing a Progressive MS Haiku is much more pleasant than having a surprise “Boogie Boogie Boogie” shouted at you. If you don’t believe me, just click on the video below:<br />
<br />
<br />
<center>
<iframe allow="autoplay; encrypted-media" allowfullscreen="allowfullscreen" frameborder="0" height="360" src="https://www.youtube.com/embed/BB6V5Zbj7DI?rel=0" width="640"></iframe></center>
<br />
<br />
<br />
For those who have forgotten the rules of writing a haiku, let me refresh your memory. Haiku is a Japanese form of poetry, composed of only three lines. The first line must be five syllables, the second seven syllables, and the final third line 5 syllables again. Easy peasy haiku squeezy. As luck would have it, “Progressive MS” is five syllables and therefore makes for an easy first or third line.<br />
<br />
To get you started, here are a few Progressive MS haikus I composed myself. Please use the hashtag #ProgressiveMSHaiku if you post your own poetic creations on Facebook, Instagram, or Twitter.<br />
<br />
Haiku #1<br />
Progressive MS <br />
Stole everything but my soul <br />
You mother f*cker<br />
<br />
<br />
Haiku #2<br />
Progressive MS<br />
Enough with the half-assed drugs <br />
I want a damned cure<br />
<br />
<br />
Haiku #3<br />
Progressive MS<br />
Stick my head in a blender <br />
And please press purée<br />
<br />
<br />
Haiku #4<br />
Stripped of all pretense <br />
I discovered my essence <br />
Progressive MS<br />
<br />
Right then, I’m sure you get the idea. Now let’s have at it…The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com55tag:blogger.com,1999:blog-3605254543761446258.post-81969238821938681292018-03-11T22:14:00.002-04:002018-04-02T20:27:00.479-04:0015 Years a Progressive MSer<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-6dexVQLEHSE/WqXb8L1_UPI/AAAAAAAAD8I/HuflqV1rvzUrwTw0cd2PIrSyHDh1ed--ACLcBGAs/s1600/unhappy%2Banniversary.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="337" data-original-width="474" height="227" id="id_96cd_9b5e_5b56_8ad2" src="https://1.bp.blogspot.com/-6dexVQLEHSE/WqXb8L1_UPI/AAAAAAAAD8I/HuflqV1rvzUrwTw0cd2PIrSyHDh1ed--ACLcBGAs/s320/unhappy%2Banniversary.jpg" style="height: auto; width: 320px;" width="320"></span></a></div>
<span style="font-family: inherit;">You think back and it seems like a million years ago, or yesterday. The first Sunday of March 2003, an unusually cold day for that time of year. Despite the winter chill, you decide to take your beloved Labrador Retriever, Stella, for a long walk along the Hudson. After strolling about 2 miles on the paved path running next to the river, you turn homeward. You don’t return the same way you came but instead choose to take the city streets back to your wife, waiting in your apartment. </span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">On the way home, you slowly notice that your right knee is buckling backward, causing a peculiar limp. It’s not painful as if with a sprain or bruise, but instead, a weird hitch that seems caused by weakness within the knee itself. As you walk further the limp becomes more pronounced, and the inside of your head starts feeling kind of fuzzy. It’s all very strange and unsettling. You know in your gut this isn't normal, that something fundamental has changed. </span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">About two months later, after a disconcerting blur of doctor’s appointments and medical tests, you’re given a preliminary diagnosis of multiple sclerosis. It’s one week before your first wedding anniversary. You’re sad and disoriented and angry and frightened, very frightened. Though you’re still mostly ignorant about the disease itself, you instinctively know you've reached an unhappy line of demarcation. There will now be a time before the limp and after. Little do you suspect how stark a marker this will become, a deep impenetrable moat separating two entirely different lives, both lived in one lifetime.</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">Now, 15 years later, your old healthy life is receding faster and faster into the haze, like a dream remembered crisply upon awakening but lost to the ether by noon. After the limp appeared the disease hit fast and hard. No relapses and remissions for you, only progressing disability, a creeping paralysis. Less than four years after that cold day in March, the beast forced you to "retire" at the ripe old age of 43, just when your career was poised to go parabolic. A year later MS planted your ass firmly in a wheelchair. Fast forward 10 years to the present and your right side is dead weight. Your declining left side insists on following the same horrid script written by your right, like a bad sequel to a terrible movie. Somehow, on most days you outwit despair, focusing on whatever glimmers of hope the gaping abyss before you can’t hide. On other days the darkness wins out.</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">You remember that years before the limp you'd experienced a series of odd symptoms that defied explanation. In 1997 the doctors thought you might have a rare form of lupus, but the medical minds could never arrive at a conclusion, and during the five or six relatively quiet years after you pushed any concerns aside. On the whole, that would make it 21 years since things started going haywire. Your disease could be getting its bachelor’s degree by now. A BS in MS, or, more appropriately, a BS in BS. As an adult, you've been sick longer than you've been healthy. The gods must be crazy, and an indifferent universe could not care less.</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">You ponder all the things these wearisome years have taught you, from nuggets of wisdom to knowledge you’d rather not possess. You’d have been perfectly happy to live out your days not knowing that for some reason you quickly fall asleep in the noisy, claustrophobic confines of MRI machines, that you’d rather have a spinal tap than dental work, and that you have an innate ability to grasp complicated medical concepts and translate them into plain English. As hidden talents go, you have been fine with leaving that one undiscovered.</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">Then again, you always had a knack for cutting through the bullshit, and the reality is that most medical jargon exists primarily to confuse the public and hide the fact that large parts of the purportedly gleaming modern medical miracle machine are in reality constructed of chewing gum and chicken wire. You would relish being happily unaware of the fact that for some physicians medicine is indeed a calling, but for many others it is primarily a business. Just like any other job, some are very good at practicing medicine,&nbsp;but others just plain suck. What do you call somebody who graduates from medical school with a C- average? A doctor.</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">All the downtime that comes with being a cripple has provided you ample opportunity to dissect your long-lost healthy life and graced you with perspectives you likely would have otherwise never gleaned. You remember with deep regret all of the healthy time wasted on the small stuff, and you now see with crystal clarity that almost all of it was small stuff. If you could only have back half of the sleepless nights and anxiety-filled days vainly spent lamenting lost loves and missed opportunities. In retrospect, you see that new romances and promising circumstances inevitably came your way just as soon as you reluctantly let go of your negativity and allowed&nbsp;room for new people, places, and things. Our emotions are born of us, not we of them, and just as you now most often choose hope over despair, you could then have decided to seek contentment rather than wallow in self-imposed neurotic torment. Over the long run, most people are dealt an equal number of good and bad hands; it’s the way you choose to play them that determine the winners and losers. But just as youth is wasted on the young, health is wasted on the healthy.</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">You think of all the incredible souls you’ve met since your diagnosis, other MSers coping with the disease with their own mixture of poise and grit in the face of mounting indignities and physical insults. They have inspired you, commiserated with you, laughed and cried with you. You rue the toll you’ve seen the monster take on so many. You grieve for those who gave it their all but eventually succumbed. You remember each of them with perpetual sadness at their passing and mounting anger that more has not been done to put an end to this scourge. Treating but not curing is a great business model, but far too many human beings are left withering on the vine as the MS industry seems quite content with this paradigm, it's coffers overflowing.</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">The ripple effect of the disease is insidious, and you feel guilt at the impact your illness&nbsp;has had on your friends and loved ones. You are keenly aware of the palpable emotional pain felt by your old mom and dad when they see or hear about your ever compounding struggles, of the hidden disappointments experienced by your incredibly loyal wife who has watched her own dreams of a future filled with romance and adventure pilfered and plundered, of the unreturned emails and phone calls from friends left wondering why you choose to remain out of touch even though you hardly leave your apartment. You have no real answers for them, except that on some basic level you now understand why gravely wounded animals retreat into the brush to meet their fates alone.</span><span style="font-family: inherit;"><br></span><br>
<span style="font-family: inherit;">Most 15 year anniversaries warrant some sort of celebration, but you don’t feel much like celebrating this one. You are grateful to still be here and to retain the functionality to write this essay, but having been struck with this disease is something you will never, ever get used to. Each day you awake to the shock that your dreams are not reality and your reality is not some demented dream. In instants without distraction, you wonder how much more of this you can take and even how much more of this you want to take?&nbsp;</span><div><span style="font-family: inherit;"><br></span></div><div><span style="font-family: inherit;">You somehow find ways to occupy yourself despite a growing alienation from the healthy world that surrounds you. You fight the envy you feel for those who walk and jog and gesticulate, utterly oblivious to their incredible good fortune at simply being able to do so. You listen to those tied in knots by troubles that you now realize are mere fripperies, and fight the urge to scream that you’d swap their plight for yours in half a heartbeat. You are not proud of these feelings, but there they are.</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">Most of all, you simply persevere. You try to make sense of it all, to tease some meaning from these last 15 years, to convince yourself that there is some method to this madness. You wonder if some long-ago actions taken or not taken, or decisions made or not made, might have led you down a path free from MS. You mourn what might have been, what almost was.</span><span style="font-family: inherit;">&nbsp;You dig for nuggets of hope and reasons to believe, even if that means mining through vast mounds of existential detritus.&nbsp;</span><div><div><div>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">Time and time again you ask yourself and the universe, “what’s the point?”, until you finally realize that the real question is “what’s the point of asking what’s the point?” You decide that if there are any answers, they are beyond the scope of your comprehension, and then you turn on the latest episode of The Walking Dead and start asking the really important questions, like&nbsp;how in the world you would charge your electric wheelchair during a zombie apocalypse? And, if you were to become a zombie, would you suddenly be able to walk? Or would you be one of The Rolling Dead? </span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">Priorities, friends, priorities…</span><br>
<span style="font-family: inherit;"></span><br>
<span style="font-family: inherit;">Here’s one of my favorite songs by the great American songwriter John Prine, the lyrics of which pretty much sum it all up for so many, sick and healthy alike. BTW, an “Angel from Montgomery” is what death row inmates used to call a governor’s stay of execution in the state of Alabama…</span><br>
<span style="font-family: inherit;"></span><br>
<center>
<span style="font-family: inherit;"> </span><iframe allow="autoplay; encrypted-media" allowfullscreen="" frameborder="0" height="360" id="id_817c_49d4_2d10_75cb" src="https://www.youtube.com/embed/VtFCUIsl4Yc?rel=0" width="640"></iframe></center>
<span style="font-family: inherit;"></span><br></div></div></div></div>The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com50tag:blogger.com,1999:blog-3605254543761446258.post-27437842347065184032018-02-21T02:03:00.002-05:002018-02-21T02:43:37.567-05:00Tisch Center MS Stem Cell Trial: Interview with Dr. Saud Sadiq, Director and Lead Research Scientist (Part Two)<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-J40wqnVjax0/Wo0ivtbx-1I/AAAAAAAAD6k/1_JLSJYISac5gCC87B_PlhdWmD4Si5kYACLcBGAs/s1600/Tisch%2Bresearchers.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="180" data-original-width="180" height="200" src="https://3.bp.blogspot.com/-J40wqnVjax0/Wo0ivtbx-1I/AAAAAAAAD6k/1_JLSJYISac5gCC87B_PlhdWmD4Si5kYACLcBGAs/s200/Tisch%2Bresearchers.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Sadiq and research staff at the Tisch Center</td></tr>
</tbody></table>
The Tisch MS Research Center of New York (<a href="http://www.tischms.org/" target="_blank">click here</a>) will soon begin its first-ever FDA approved Phase 2 regenerative stem cell study for multiple sclerosis. Last week, I published the first part of my interview with Dr. Saud Sadiq, the Director and Lead Research Scientist of The Center, which discussed&nbsp; the Phase 1 study and its results (<a href="http://www.wheelchairkamikaze.com/2018/02/tisch-center-stem-cell-study-interview.html" target="_blank">click here</a>). As promised, here is the second part of our discussion, which focuses on the upcoming Phase 2 study, the Tisch Center's new stem cell laboratories, how stem cells might help repair damaged nervous system tissues, and some of the other multiple sclerosis research projects being conducted by Tisch Center researchers and scientists.<br />
This interview has been lightly edited for readability, and I’ve added some “WK Notes,” which attempt to translate overly complicated medical jargon into plain English.<br />
<br />
WK: The Tisch center is now preparing to embark on Phase 2 of your MS stem cell trial. When do you expect this next phase of the study to get started?<br />
<br />
Dr. Sadiq: After the&nbsp; Phase 1 study ended, we made a commitment at The Tisch Center that we needed to make our stem cell laboratories absolutely state-of-the-art. We’ve invested heavily in building a new stem cell lab, which is being completed now. Everything’s automated, it’s a next generation stem cell facility that will be functional and certified in about a month and a half. Then we will be prepared to start the Phase 2 study. We do still need some additional funding for Phase 2. We are applying to the National Multiple Sclerosis Society for a grant. Though they didn’t support Phase 1, given the impressive results of that trial we are hopeful that they will support us as we go forward. We also expect private contributions to help fund Phase 2, as these have always been the lifeblood of the foundation.<br />
<br />
WK: How many patients will be involved in the Phase 2 study?<br />
<br />
Dr. Sadiq: There will be 50 patients involved. It will be a double-blinded crossover study specifically designed to establish the effectiveness of the neural progenitor stem cells we've developed in our laboratories. So it has an entirely different aim than the Phase 1 sstudy, which was intended primarily to determine the safety and tolerability of our stem cell procedures. We are going to give Phase 2 study participants six treatments, one every two months. Therefore there will be more treatments given in greater frequency than in the Phase 1 study.<br />
<br />
WK: So, with 50 patients, 25 will be getting actual stem cells, and 25 will be getting placebo treatments?<br />
<br />
Dr. Sadiq: Yes, in the first year 25 subjects will get treatment and 25 will get placebo, and in the second year the ones who got placebo will get treatment and vice versa.<br />
<br />
WK: What will the patient population look like for this Phase 2 trial?<br />
<br />
Dr. Sadiq: The patients for this trial will have to meet much tighter inclusion criteria then the patients in Phase 1. They all must be diagnosed with SPMS or PPMS. They have to be ambulatory, so they’ll all have EDSS scores between 3 and 6.5. The FDA is requiring that we have an equal distribution of the EDSS scores. So there will be equal numbers of patients distributed between all the points along the EDSS scale. The other limitation is that all patients will need to have had the disease for 15 years or less.<br />
<br />
WK: Will the study participants continue with their disease modifying drugs?<br />
<br />
Dr. Sadiq: Yes, but they can’t have switched medications within six months from the start of the trial.<br />
<br />
WK: Once they are in the trial they’ll have to remain on the same DMD for the duration of the study?<br />
<br />
Dr. Sadiq: Yes.<br />
<br />
WK: What will be the total duration of this trial?<br />
<br />
Dr. Sadiq: There will be two years of study and placebo, and one year of follow-up. So a total of three years.<br />
<br />
WK: Just to be clear, in the third year none of the patients will be receiving stem cells?<br />
<br />
Dr. Sadiq: That’s correct, in the third year there will be no stem cells and no placebos. After the second year, all patients will have received six treatments. The patients who received stem cells in the first year will have placebo in the second year, and the patients who received placebo in the first year will receive stem cells in the second. The third year will be for observation of all patients.<br />
<br />
WK: For all the folks out there with RRMS, if the Phase 2 trial proves successful then the stem cell protocol developed at Tisch could be applied to them as well, correct?<br />
<br />
Dr. Sadiq: For patients with relapsing-remitting disease who experience a relapse that results in damage from which they don’t recover, stem cells could be introduced in an attempt to repair that damage. That would be the dream scenario, and it could render disability resulting from MS a thing of the past. But at this point were getting ahead of ourselves…<br />
<br />
WK: As we move forward into a world in which stem cell treatments for MS become a standard of care, would you anticipate that patients will need continued and repeated stem cell treatments to maintain or advance whatever benefits they realize until a cure is finally found for multiple sclerosis?<br />
<br />
Dr. Sadiq: Yes, that’s likely. I think the Phase 2 trial will really go a long way towards answering that question. It will be important to ascertain what happens to patients in the years after they receive their stem cells. Do they maintain their benefits, do they return to baseline, or do they fall somewhere in the middle? These will be significant findings. The design of this crossover trial will allow us to figure that out. My feeling going in is that patients will need stem cell treatments over the long-term, maybe not six a year after the initial treatment., but perhaps less frequently to maintain whatever improvement is seen.<br />
<br />
WK: The neural progenitor cells developed by the Tisch Center – or any regenerative stem cells, for that matter – don’t directly address the disease process, correct? If so, does the disease remain active despite the use of these stem cells?<br />
<br />
Dr. Sadiq: Yes, that’s right, the cells are not a cure for the disease. They hopefully secrete trophic factors that would stimulate the body’s own progenitor cells to activate and induce repair at sites of injury. (WK Note: trophic factors are elements which cause the body to maintain or start some action, in this case repairing damaged nerve cells and possibly affording some protection against attack from immune cells.)<br />
<br />
WK: So, the stem cells may not necessarily repair injury all by themselves, but they may jumpstart natural repair mechanisms within the bodies of the patients in which they are implanted?<br />
<br />
Dr. Sadiq: I think that’s the most likely mechanism. Whether they play some direct role is something we have to figure out, but I think it’s more likely that they’ll turn on a patient’s own progenitors and also create a trophic environment that acts as a shield from the immune system and allows the body to make repairs.<br />
<br />
WK: I know that stem cells aren't the only focus of the Tisch Center's researchers and scientists. I’d like to touch on The Tisch Multiple Sclerosis Research Center of New York itself, and some of the other areas of research that are currently ongoing in The Center’s labs. Could you give us a peek inside and tell us about some of the other projects Tisch researchers are working on?<br />
<br />
Dr. Sadiq: Well, at the Tisch Center our original goal was to identify the root cause of the disease. It may be some type of immune cell, or some unidentified infectious agent, or maybe some other environmental element. Once we can identify the cause of multiple sclerosis, we can then methodically work towards a cure. And finding a cure is our ultimate goal.<br />
<br />
WK: So, the Tisch Center currently has researchers who spend their days searching for the root cause of multiple sclerosis?<br />
<br />
Dr. Sadiq: Yes, absolutely. I try to focus on the real challenges that I see as a clinician treating patients every day. My focus is on trying to understand primary progressive MS, which is perhaps the most challenging form of MS as far as treatment is concerned. There are very few treatments that can alter the course of progressive MS. We’ve created an animal model in our lab to try to understand the mechanisms of progression and why remyelination does not take place at all in this form of the disease. In relapsing-remitting MS we see damage occur and then some repairs get made by the body, especially in early disease. This is something not seen in progressive MS. We need to understand the mechanisms of progression better. We are also focused on cognition dysfunction because that can really dehumanize the patients who suffer from severe cognitive deficits.<br />
<br />
We are also hard at work identifying biomarkers that can indicate the activity and severity of the disease. We’ve published a lot of papers in this area. We are doing a lot of work on metabolic dysfunction in the central nervous system in MS, and hopefully, that will lead us to readily identify markers that can pinpoint progression and disease activity, which will, in turn, allow us to assess the effectiveness of treatments in individual patients. In conjunction to the Phase 2 stem cell study itself, one of our aims is to analyze the spinal fluid of all of the study participants for markers that may predict which patients are going to get better by Identifying which patients experience actual repair and remyelination. The goal of identifying biomarkers is to be able to tailor treatments to each individual patient, specific to them and the intricacies of their disease. MS is a very heterogeneous illness, meaning that it affects each patient differently. Through the use of biomarkers, we hope to be able to address these differences on a patient by patient basis.<br />
<br />
WK: The Tisch Center is not affiliated with any hospital or academic institution, correct, so it’s an entirely independent research entity?<br />
<br />
Dr. Sadiq: Yes we are completely independent. We run Tisch like an academic center in every regard. We have guest speakers and all of the activities that would be associated with typical University research centers, but we are not affiliated with any academic centers. We retain absolute independence in choosing our areas of research.<br />
<br />
WK: If you don’t have any of these affiliations, how is all of the research we’ve discussed funded?<br />
<br />
Dr. Sadiq: We rely entirely on grants and donations. We use almost all the funds raised directly for research. Fully 90% of all monies raised goes directly into research, which is really an extraordinarily high number compared to other organizations. We keep expenses very low, so only a small percentage of funds raised go towards administrative costs and other such overhead. All of our tax forms and documentation in this regard are available online.<br />
<br />
WK: My understanding is that you are not currently receiving any funding at all from the National Multiple Sclerosis Society. Is this correct?<br />
<br />
Dr. Sadiq: Yes, that's right, we’ve had some bad luck with the MS Society, but they promised to look into our Phase 2 study, and I’m putting in a grant application. Hopefully, this time they’ll get involved.<br />
<br />
WK: Obviously, the Tisch family (<a href="https://www.forbes.com/profile/tisch/" target="_blank">click here</a>) is involved, but where does the rest of the Center’s funding generally come from?<br />
<br />
Dr. Sadiq: The Tisch family is a very big supporter, but so are our patients and their loved ones. We have a very loyal following of patients and their families and other supporters that really enable this to happen. They’ve been supporting us for close to two decades, even before we were formed as an independent center.<br />
<br />
WK: How much is this Phase 2 trial going to cost?<br />
<br />
Dr. Sadiq: The build-out of the laboratory cost $5 million, and that’s a done deal. The trial itself calls for another $4 million, and we are currently raising funds for the study itself.<br />
<br />
WK: So funding is still needed for the Phase 2 trial?<br />
<br />
Dr. Sadiq: Yes.<br />
<br />
WK: Well, speaking strictly for myself as a patient who has been ravaged by this disease, I can’t think of any cause more important and worthy of donations.<br />
<br />
Dr. Sadiq: That’s very kind. Maybe I should hire you as a fundraiser…<br />
<br />
WK: You can pay me in stem cells… Even though I know I don’t qualify for the trial because of my&nbsp; level of disability…<br />
<br />
Dr. Sadiq: That’s true, but don’t ever lose hope. Every day researchers here at Tisch and others around the world are working hard towards solving the puzzle of MS. I’m personally obsessed with curing multiple sclerosis.<br />
<br />
<br />
<br />
As a patient of Dr. Sadiq’s, I can attest to his obsession with curing the disease. The man works at least six out of every seven days and even has a bedroom behind his office at the clinic affiliated with the Tisch Center. The clinic is called The International Multiple Sclerosis Management Practice (<a href="http://www.imsmp.org/" target="_blank">click here</a>).&nbsp; I’m also acquainted with some of the researchers at the Tisch Center, who are so dedicated that they'll even put up with my incessant questions when I manage to corner one of them with my wheelchair.<br />
<br />
For those interested in donating to the Tisch Center, you can learn about the various ways to contribute by (<a href="http://www.tischms.org/ways-donate" target="_blank">clicking here</a>). If you’d like to encourage the National Multiple Sclerosis Society to get behind the first ever FDA approved Phase 2 MS stem cell trial with a nice big grant, here’s a webpage with contact info for all of the Society’s senior leadership (<a href="https://www.nationalmssociety.org/About-the-Society/Leadership/Senior-Leadership-Team" target="_blank">click here</a>). Please be polite If you do reach out to the NMSS. As my grandmother always told me, you can catch more flies with honey than you can with vinegar…The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com7tag:blogger.com,1999:blog-3605254543761446258.post-41570222139153573752018-02-14T00:00:00.000-05:002018-02-18T22:35:23.424-05:00Tisch Center MS Stem Cell Study: Interview with Dr. Saud Sadiq, Director and Lead Research Scientist (Part One)<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-xS2skXZURcc/WoO_0O86f2I/AAAAAAAAD5c/AJxQXdPsaHwEoS5Wxw1YDthx0F7FRLi7ACLcBGAs/s1600/Dr.%2BSadiq.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="800" data-original-width="1200" height="213" id="id_3a0b_7d76_9c_f62b" src="https://4.bp.blogspot.com/-xS2skXZURcc/WoO_0O86f2I/AAAAAAAAD5c/AJxQXdPsaHwEoS5Wxw1YDthx0F7FRLi7ACLcBGAs/s320/Dr.%2BSadiq.jpg" style="height: auto; width: 320px;" width="320" /></a></div>
The Tisch Multiple Sclerosis Research Center of New York (<a href="http://www.tischms.org/" target="_blank">click here</a>) recently published the Phase 1 results of the first-ever FDA approved multiple sclerosis regenerative stem cell study (<a href="http://www.tischms.org/phase-i-stem-cell-trial-published-results" target="_blank">click here</a>). The results created quite a buzz in the MS community, as the headline results stated that 70% of trial participants experienced increased muscle strength, and 50% saw improved bladder function. As the study included only patients with progressive MS, many of them with advanced disability, these results seem especially impressive.<br />
<br />
Given the level of interest in this trial and stem cells in general, I thought it important to interview the man behind the study, Dr. Saud Sadiq, the Director and Lead Research Scientist of the Tisch MS Research Center. Luckily, Dr. Sadiq has been my MS neuro for the last 14 years, so a simple phone call was all that was needed to set things up. Dr. Sadiq and his researchers had been working towards this Phase 1 study for over a decade. Since the Tisch Center is not affiliated with any academic or healthcare institution, all monies for the trial were raised privately through a certified nonprofit foundation.<br />
<br />
My interview with Dr. Sadiq is quite long but full of important information, so I’ll publish it in two parts. This installment will explore the recently released Phase 1 trial results and their potential implications. The next installment will include an overview of the upcoming FDA approved Phase 2 trial, as well as a discussion of how regenerative stem cells might work and their possible impact on the treatment landscape of multiple sclerosis. It also covers some of the many different areas of groundbreaking research currently underway at the Tisch Center's laboratories. I’ll publish the second installment next week.<br />
<br />
This interview was lightly edited for readability. I’ve included some “WK Notes”, which explain in layman’s terms some of the more complicated medical jargon used in the discussion.<br />
<br />
WK: Dr. Sadiq, you recently published the results of your Phase I MS stem cell trial, and they look quite strong. To start, can you tell me about the patient population of the study?<br />
<br />
Dr. Sadiq: The patient population consisted of patients with clinically definite multiple sclerosis who had either secondary progressive or primary progressive MS. They had relatively stable disability scores – we use the EDSS scale to assess disability scores – in the years preceding inclusion into the study. Their EDSS needed to have not changed in the six months proceeded the study. Of the 20 people in the study, 10 of the patients we included used wheelchairs or had EDSS of 7.0 or above, and another 10 patients had an EDSS of between 3.5 and 6.5. The majority of patients were in the more disabled category and were using aids such as canes or wheelchairs.<br />
<br />
WK: Why didn’t the study include any relapsing-remitting patients?<br />
<br />
Dr. Sadiq: Well, remember, this was a Phase 1 trial that was designed primarily to assess safety. Relapsing-remitting patients tend to do well with disease modifying treatments, so evaluating recovery would have been much more difficult, even though this wasn’t a primary focus of this trial.<br />
<br />
WK: You mentioned disease modifying drugs. Were the patients chosen for the study on disease modifying drugs, and if so, did they continue them throughout the study?<br />
<br />
Dr. Sadiq: Yes, most of the trial subjects were on the drugs we commonly use to treat MS, including Tysabri, Rituxan, and intrathecal methotrexate (WK note: intrathecal (spinal) injections of methotrexate is one of Dr. Sadiq’s preferred treatments for patients with progressive MS. He also treats many of his progressive MS patients with Rituxan).<br />
<br />
WK: What was the age range of the patients?<br />
<br />
Dr. Sadiq: The youngest patient was in his 20s, and the oldest were in their 60s.<br />
<br />
WK: Let’s talk about the type of cells that were used. These were not raw mesenchymal stem cells, which are the most common type of cells used in other stem cell trials and in for-profit clinics, correct?<br />
<br />
Dr. Sadiq: That’s right. Basically, in our laboratory, we take a patient’s bone marrow and separate out the mesenchymal stem cells. We then purify and clone them, and then freeze them for use in subsequent treatments. The cells harvested from one bone marrow extraction – we harvest from the breastbone – can be used for multiple procedures. Before the actual treatment, the cells are then grown to about 100 million mesenchymal stem cells which we then convert into neural progenitor cells, cells which are committed to a neural lineage (WK note: neural progenitor cells are stem cells specific to the central nervous system). We usually get between 5 million and 10 million neural progenitors, and that’s what we inject into the spinal fluid of the patients.<br />
<br />
WK: What exactly are neural progenitor cells as compared to raw mesenchymal stem cells?<br />
<br />
Dr. Sadiq: Mesenchymal stem cells have the ability to differentiate into several different types of tissues. They can turn into fat cells or cartilage cells, but they can also differentiate into heart cells and liver cells, among others. Because we were injecting cells directly into the spinal fluid, we wanted to commit them to neural lineage so they would not differentiate into other kinds of tissues once inside the patient.<br />
<br />
WK: I understand that the transformation process that turns mesenchymal stem cells into neural progenitors is something that was developed exclusively in the Tisch Center’s laboratories?<br />
<br />
Dr. Sadiq: Yes, we published the process in a number of papers. The details of the differentiation process were detailed in these reports.<br />
<br />
WK: So, the details of this process aren’t a secret, they can be replicated in any stem cell laboratory?<br />
<br />
Dr. Sadiq: Yes, between this paper and previously published papers all of the details are available.<br />
<br />
WK: To your knowledge, though, the Tisch laboratories are the only ones using this process?<br />
<br />
Dr. Sadiq: Yes.<br />
<br />
WK: Let’s talk about the treatment protocol that was used in this Phase 1 trial. How many stem cell treatments did the trial subjects get, and at what time intervals?<br />
<br />
Dr. Sadiq: In this Phase 1 trial, we used three treatments on each patient, and the treatments were given every three months. We used between five and 10 million cells for each treatment. So, in this trial of 20 patients, we did a total of 60 stem cell treatments, and roughly 80% of those involved the injection of 10 million neural progenitor cells.<br />
<br />
WK: How long did the study last? And was there a placebo control group?<br />
<br />
Dr. Sadiq: The trial lasted two years, and there was no placebo control group. The capacity of our laboratories at the time was a limiting factor, so we had to stagger the treatment of patients.<br />
<br />
WK: Even though the trial lasted two years, none of the patients received more than three treatments, and they all received them at three-month intervals, correct?<br />
<br />
Dr. Sadiq: That’s right, nobody got more than three treatments.<br />
<br />
WK: Okay, let’s move on to the topic that’s probably of most interest to patients, the actual results that you saw from the trial. The headlines were that 70% of the patients are an increase in muscle strength and that 50% saw improvement in bladder function. Could you give us some details on those numbers?<br />
<br />
Dr. Sadiq: I think the main thing that has to be stressed is that the study was designed to look at safety and tolerability because nobody in a trial setting had previously injected stem cells multiple times at regular intervals into patients. We really had to establish safety and tolerability. We did this successfully, as all patients received all of their treatments and tolerated them well. There were no adverse effects except for very mild headaches and fever, which were transient and generally didn’t last more than 24 hours. There were no hospitalizations and no deaths, and this safety profile was really the primary purpose of this Phase 1 study.<br />
<br />
As to the question of efficacy, we have to be very careful because this was not a placebo-controlled or blinded study, and most of the patients expected that they would get better. What we did see when assessed by muscle exam using the standard assessment tools – which were performed by a neurologist who wasn’t involved in the administration of the cells – was that 70% of the treated patients did see an increase in muscle strength in at least one muscle group. In addition, 50% of patients had significant bladder function improvement.<br />
<br />
WK: Did some patient groups appear to respond better than others?<br />
<br />
Dr. Sadiq: Yes, although patients did tend to improve across the board. Not unexpectedly, the less disabled they were, the more likely they were to improve. Overall, the less disabled did better than those with higher degrees of disability. Also, the secondary progressive patients tended to do better than the primary progressive patients. But remember, these were very small numbers, only a total of 20 patients of which only four had PPMS. But generally, we saw a drop off in response rates in patients with EDSS 6.5 and above.<br />
<br />
WK: Why do you think there was this drop-off in efficacy seen in patients with EDSS 6.5 and above?<br />
<br />
Dr. Sadiq: I think the integrity of axons is probably a key factor in whether they will rehabilitate or not. If you still have an electrical connection, it’s easier to repair, and scar formation from lesions probably also impedes repair. The less structural damage there is, the easier it is to repair the problem.<br />
<br />
WK: What are your thoughts on repairing the damage of patients with higher levels of disability, who currently must rely on wheelchairs?<br />
<br />
Dr. Sadiq: I think these are our hardest challenges. Once we can figure out how to eliminate scar tissue in the central nervous system, that will really open the door (WK note: scar tissue is created by the damage done by long-standing MS lesions). At one point we were using enzymes to try to eliminate scars. Once we can understand not just remyelination but also the regeneration of axons, I think that will be the way to achieve the goal of restoring function in more disabled patients (WK Note: axons are the long threadlike part of a nerve cell along which impulses are conducted from the cell body to other cells). That’s why we are so focused in our lab in trying to figure out primary progressive multiple sclerosis.<br />
<br />
WK: Were any of the patients complete nonresponders?<br />
<br />
Dr. Sadiq: Yes, there were. Some of the PPMS patients as well as some of the more disabled SPMS patients.<br />
<br />
WK: You mentioned the lack of a placebo-controlled group. I’d like for a minute to discuss the placebo effect because many patients don’t, I think, have a very good understanding of what the placebo effect actually entails. Many believe that when improvements are attributed to the placebo effect that these benefits are being disparaged as imaginary or “made up” by the patient. Could you comment on the science behind the placebo effect?<br />
<br />
Dr. Sadiq: The placebo effect is real. It’s scientifically shown to be real. Even in cancer trials, whatever the mechanism, it’s real. It’s not simply psychological. It’s a conviction where the patient thinks they are going to get better and somehow that has a physical impact. Now whether the brain produces certain well-being cytokines or humoral factors or if you get an endocrine surge, somehow that has a positive effect that we still don’t fully understand. Since the late 1950s, the placebo effect has been recognized as a genuine phenomenon. In fact, there is a case of a cancer patient who got cured even though they had been given a placebo and not the drug being tested. So it’s not just some insignificant, mild effect. Generally, it’s considered that in any study without a placebo arm there’s about a 30% effect that can be attributed to placebo. This is real, when the patient is hopeful, the patient often feels better.<br />
<br />
The thing about our study which is encouraging and leads me to believe the improvements we saw are not all attributable to the placebo effect is that we saw the most improvements in the patients that were the least disabled. This is something you would expect to see in a double-blind trial. In our trial, we probably chose the worst patients to study in that they had the disease for many years and most of the patients had significant disability. Our mean EDSS was 6.8 at baseline. Our average disease duration was about 18 years. These are never the patients who are chosen for pharmaceutical company studies, who are generally much less disabled and have shorter disease duration. The patients we used actually stacked the study’s chances against getting any positive effect.<br />
<br />
WK: Just to be clear about EDSS, what’s the difference between 6.0, 6.5, and 7.0?<br />
<br />
Dr. Sadiq: 6.0 is somebody who needs a cane to walk, 6.5 is somebody who needs bilateral assistance like a walker or bilateral crutches, and a 7.0 is a somebody who requires a wheelchair.<br />
<br />
WK: In the trial, what kind of results did you see in patients who were EDSS 7 or above?<br />
<br />
Dr. Sadiq: We saw two patients who had not been able to take more than a step or two who after treatment were able to walk with a walker for 25 feet. Whether that was placebo or not, I don’t know because this level of effect hard to explain. This was out of 10 patients who needed wheelchairs. It’s certainly intriguing.<br />
<br />
WK: So two out of ten patients who hadn’t been able to ambulate at all and were entirely reliant on wheelchairs before the trial were able to walk with the aid of a walker for 25 feet after the study, correct?<br />
<br />
Dr. Sadiq: Yes.<br />
<br />
WK: Well, placebo or not, that seems like a remarkable result.<br />
<br />
Dr. Sadiq: Yes, but we need to see if similar results are seen when we do the Phase 2 trial, which will be specifically designed to assess efficacy.<br />
<br />
I hope readers have found Part One of my interview with Dr. Sadiq useful and informative. Look for Part Two next week, in which the Phase 2 study and just how the stem cells might work are explored. We’ll also talk about some of the other research currently being conducted in the Tisch Center’s laboratories.The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com21tag:blogger.com,1999:blog-3605254543761446258.post-9017864320640963442018-02-05T02:18:00.000-05:002018-02-05T02:30:05.383-05:00Can A 100-Year-Old TB Vaccine Stop MS, Diabetes, and Other Diseases?<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-rbh3w1xzrS8/WnZ9WV4nVvI/AAAAAAAAD4Y/gQ_hDm-Uybg1hK2M3k6EutAwLa0RmWP0gCLcBGAs/s1600/BCG%2Bvaccine.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1438" height="320" src="https://2.bp.blogspot.com/-rbh3w1xzrS8/WnZ9WV4nVvI/AAAAAAAAD4Y/gQ_hDm-Uybg1hK2M3k6EutAwLa0RmWP0gCLcBGAs/s320/BCG%2Bvaccine.jpg" width="286" /></a></div>
If I told you that a century-old vaccine – initially developed to combat tuberculosis – now appears capable of stopping or slowing multiple sclerosis, type I diabetes, and other autoimmune diseases by changing the workings of the immune system at the genetic level, would you think I’ve finally gone off the deep end? Well, hold onto your hats, or hair, or whatever else may be sitting on top of your head because the truth is out there (yes, I’ve been binge-watching episodes of The X-Files), the ramifications of which could change the treatment landscape for many hideous diseases.<br />
<br />
I recently attended a presentation given to a group of neurologists and MS researchers by Dr. Denise Faustman (<a href="http://faustmanlab.org/research/BCGTrials.html" target="_blank">click here</a>), a Harvard University medical researcher. Dr. Faustman is at the forefront of research into the Bacillus Calmette-Guerin (BCG) vaccine and in early trials has shown that the vaccine is capable of restoring dysfunctional parts of the immune system in patients with long-standing type I diabetes (<a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0041756" target="_blank">click here</a>). Dr. Faustman is currently conducting a phase 2 trial on long-term type I diabetics, with hopes of reporting results this summer. <br />
<br />
Other studies have shown that BCG can alter the course and severity of multiple sclerosis (<a href="http://www.bbc.com/news/health-25207033" target="_blank">click here</a>), and ongoing studies around the world indicate that the vaccine could have similar effects on a wide range of autoimmune diseases (<a href="http://www.bcgandautoimmunity.org/trials-and-research/#overview" target="_blank">click here</a>), including Sjogren’s disease, fibromyalgia (<a href="http://www.prohealth.com/library/showarticle.cfm?libid=30644" target="_blank">click here</a>), and immune mediated allergies. The vaccine is also the preferred treatment for a common type of bladder cancer (<a href="https://emedicine.medscape.com/article/1950803-overview" target="_blank">click here</a>) and there are indications that BCG may dramatically reduce the incidence of leukemia in children (<a href="https://jamanetwork.com/journals/jama/article-abstract/346032?redirect=true" target="_blank">click here</a>). It is even effective as a treatment for leprosy (<a href="https://www.sciencedirect.com/science/article/pii/S1473309906704121" target="_blank">click here</a>)!<br />
<br />
The BCG vaccine was developed at the beginning of the 20<sup>th</sup> century by two French scientists, Albert Calmette and Camille Guerin, work for which they were nominated for the Nobel Prize in 1928 (<a href="https://www.nobelprize.org/nomination/archive/show.php?id=5437" target="_blank">click here</a>). Spurred in part by the observation that milkmaids appeared to develop tuberculosis in far lesser numbers than the general population, the two scientists developed the BCG vaccine using live but very weakened bovine (cow) tuberculosis bacteria, which makes cows sick but isn’t infectious in humans. The vaccine was first used in 1921 and although it ultimately proved to be only 20%-50% effective its use soon became widespread. It remains the only vaccine for TB and is still used extensively throughout Third World countries where TB runs rampant. The BCG vaccine is on the World Health Organization’s List of Essential Medicines.<br />
<br />
At that time of the vaccine’s development, tuberculosis was epidemic and deadly. In the 1800s, TB caused about 25% of all deaths in Europe (<a href="https://en.wikipedia.org/wiki/Tuberculosis" target="_blank">click here</a>). The disease, commonly called “consumption” back in the day, is highly contagious and has been infecting mankind since antiquity. Signs of TB have been found in human skeletal remains dating back millennia, even into prehistory. Before the Industrial Revolution and the beginnings of modern medicine, folklore had it that tuberculosis was caused by vampires. My recent X-Files binge tells me not to completely discount this theory.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-Cpnx-CftSmc/WnZ9WKQpIxI/AAAAAAAAD4c/nYxC_VCwPpoRSlHQp6QydV4Ub7CCmW-RgCEwYBhgL/s1600/BCG%2BMS.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://3.bp.blogspot.com/-Cpnx-CftSmc/WnZ9WKQpIxI/AAAAAAAAD4c/nYxC_VCwPpoRSlHQp6QydV4Ub7CCmW-RgCEwYBhgL/s200/BCG%2BMS.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">BCG effect on MS<br />
(click to enlarge)</td></tr>
</tbody></table>
Fast-forward to the 21<sup>st</sup> century, and modern scientists are discovering that the potential uses of the BCG vaccine go far beyond the treatment of TB. A phase 1 trial conducted by Harvard’s Dr. Denise Faustman, demonstrated that multiple injections of the vaccine given to patients with long-standing type I diabetes – an autoimmune disease – produce major changes in the immune system, restoring some back to normal, though a full cure and restoration of normal blood sugars has not yet been reported (<a href="http://www.faustmanlab.org/docs/academic/JournalPone0041756.pdf" target="_blank">click here</a>). Italian researchers, using the same multiple BCG vaccination approach and the same potent strain of BCG, have demonstrated that patients given the vaccine after their first MS attack are up to 50% less likely to develop full-blown multiple sclerosis than similar patients not given BCG (<a href="https://www.healthline.com/health-news/ms-could-tb-vaccine-delay-ms-onset-120413" target="_blank">click here</a>), and that those who are eventually diagnosed with multiple sclerosis experience a more benign disease course. Click on the graphic to the left for a visual representation of BCG's effects on MS. Further studies are expected to explore whether aggressive treatment with BCG may temper or stop already established MS.<br />
<br />
In addition, early studies indicate the vaccine can protect against allergic asthma (<a href="https://www.ncbi.nlm.nih.gov/pubmed/12642835" target="_blank">click here</a>).&nbsp; Retrospective studies have demonstrated that BCG may protect against a range of childhood cancers (<a href="https://link.springer.com/article/10.1007/BF00205456" target="_blank">click here</a>). Other studies have shown that children infected with human tuberculosis bacteria before the age of seven have an extremely low incidence of developing multiple sclerosis (<a href="https://www.ncbi.nlm.nih.gov/pubmed/7211178?dopt=Citation" target="_blank">click here</a>), hinting that the TB bug changes the immune system profoundly, and may impact a range of diseases.<br />
<br />
The above benefits, as significant as they are, may only scratch the surface of BCG’s potential. The vaccine appears to work by altering the workings of the immune system at the genetic level (<a href="https://www.nature.com/articles/s41598-017-12110-2" target="_blank">click here</a>). Because it works on the genes themselves, the effects of the vaccine are long-lasting, and the vaccine's effectiveness appears to increase with time. Thus, a set of two or three vaccinations with BCG may offer robust defense against a wide variety of the autoimmune diseases that are now becoming epidemic in developed nations.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-JMDjtyrFwjo/WnZ9WFZMuQI/AAAAAAAAD4g/IlMcx8gBpB4J_klACh_17MdkpnvPpXx0ACEwYBhgL/s1600/BCG%2Bincrease%2Bautoimmune.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://4.bp.blogspot.com/-JMDjtyrFwjo/WnZ9WFZMuQI/AAAAAAAAD4g/IlMcx8gBpB4J_klACh_17MdkpnvPpXx0ACEwYBhgL/s200/BCG%2Bincrease%2Bautoimmune.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Evidence of Hygiene Hypothesis<br />
(click to enlarge)</td></tr>
</tbody></table>
Tuberculosis is caused by a type of germ called mycobacteria (<a href="https://en.wikipedia.org/wiki/Mycobacterium" target="_blank">click here</a>). The human immune system evolved in the presence of mycobacteria, which have been found in the bones of 70,000-year-old cave dwellers (<a href="https://www.sciencedaily.com/releases/2013/09/130901154024.htm" target="_blank">click here</a>). Over the last 40 or 50 years, though, as the developed world has become increasingly focused on hygiene and cleanliness, mycobacteria have been largely eliminated from the populations of First World nations. At the same time, autoimmune diseases and allergies have become epidemic in the same regions (see graphic to the right). The “old friends” or hygiene hypothesis (<a href="http://www.medicaldaily.com/vaccine-proven-effective-ms-treatment-how-infections-could-shield-against-autoimmune-diseases-264346" target="_blank">click here</a>) suggests that the absence of the bugs that were our evolutionary companions has led our immune systems to go haywire. <br />
<br />
Think of it like this: one spouse in a long married couple that first met in grade school suddenly exits the relationship. The remaining spouse is confused, disoriented, and likely to behave in unpredictable and perhaps self-destructive ways. According to the old friends hypothesis, this sort of disorientation in the immune system is driving a startling rise in diseases such as MS, lupus, diabetes, and fibromyalgia, all of which were much rarer even just 50 or 60 years ago when mycobacteria infections in humans were still common worldwide. Since BCG reintroduces mycobacteria into the body, it may help restore balance to immune systems that evolved with constant exposure to such bacteria.<br />
<br />
Unfortunately, a variety of factors are hampering research into the benefits of BCG. Modern studies exploring the use of the vaccine to combat autoimmune and other diseases are still in their early stages, and many questions remain. The vaccine is manufactured using live but inactive bacteria, meaning its potency varies depending on the manufacturing facility. In her type I diabetes studies, Dr. Faustman uses a very potent version of the vaccine manufactured in Japan which is not available in North America. In fact, BCG isn’t available anywhere in North America, as the last BCG factory in the region stopped production in 2016, due to manufacturing issues and the low profit potential of the drug (<a href="https://www.forbes.com/sites/benjamindavies/2016/11/17/sanofi-shuts-down-bladder-cancer-drug-production-inevitable-drug-shortage-to-harm-patients/#739ccf4c132c" target="_blank">click here</a>). Additionally, queries regarding the number of vaccinations needed for full potency as well as the most optimal methods of safely introducing BCG into the human body&nbsp;are still to be answered.<br />
<br />
The most significant impediment to the development of BCG as a therapy for autoimmune and other diseases, though, is a severe lack of funding. Since the drug is nearly a century old and quite cheap (single doses cost pennies in Third World nations) there is very little to incentivize the for-profit medical establishment to get behind the research. The reasons for this are myriad, but boil down to the obscene fact that all too often profits take precedence over patients in our current twisted model of medical research, which is more often propelled by the drive for ever-increasing revenues than by scientific imperative. Many potentially paradigm-shifting therapies like BCG have been left to die on the vine simply because they lack blockbuster profit potential. MS and diabetes have become mega industries generating yearly revenues of $25 billion each, creating a status quo that discourages disruptive innovation. We can’t kill the geese that lay the golden eggs, now, can we?<br />
<br />
Research into the BCG vaccine holds tremendous possibilities for fundamentally changing the treatment landscape for a wide variety of terrible diseases that are being seen with dramatically increasing frequency, including multiple sclerosis. In a perfect world, or even a less imperfect one, massive resources would be devoted to investigating BCG and other treatments that hold great promise but little profit potential. Instead, innovative researchers like Dr. Faustman and her colleagues are left to work in the shadows while a seemingly never-ending stream of “me too” drugs are brought to market, fueling massive industries devoted to treating diseases, not curing them. <br />
<br />
If only a fraction of the monies spent developing blockbuster drugs that keep patients perpetually dependent upon them were dedicated instead to seeking cures or researching innovative therapies like the BCG vaccine, modern medicine and the patients who find themselves stuck in the belly of the beast would be much better served. As they say in the X-Files, the truth IS out there. And it may just be hiding in plain sight.<br />
<br />
Here’s a terrifically informative video of Dr. Faustman giving a presentation on her work. Definitely required viewing:<br />
<br />
<br />
<center>
<iframe allow="autoplay; encrypted-media" allowfullscreen="allowfullscreen" frameborder="0" height="360" src="https://www.youtube.com/embed/BMmO2MWECv0?rel=0" width="640"></iframe></center>
<br />
<br />
<br />
<br />
<br />
On a completely different note, I was recently interviewed for an article that appeared in The Accelerated Cure Project's latest newsletter (<a href="https://www.acceleratedcure.org/sites/default/files/images/A%20Conversation%20with%20the%20Wheelchair%20Kamikaze_templatev3.pdf" target="_blank">click here</a>). For those who might be curious about what I actually sound like, the piece includes a link to the audio of our original interview. God, I hate the sound of my own voice, and I think it may just be impossible to say “um” and “you know” more than I do during the interview…The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com4tag:blogger.com,1999:blog-3605254543761446258.post-20277031738456751662018-01-15T23:39:00.000-05:002018-01-16T03:19:54.399-05:00Some Wheelchair Kamikaze Film and TV Recommendations<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-aQwQGGG9Qcc/Wl2G1PeARyI/AAAAAAAAD2s/rFAGZ6z5GVIfOEEXQLJmRrW9IiTd8dvEgCLcBGAs/s1600/stock-vector-set-of-vintage-cinema-metal-signs-retro-movie-creative-vector-design-concept-227485813.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="470" data-original-width="428" height="320" src="https://1.bp.blogspot.com/-aQwQGGG9Qcc/Wl2G1PeARyI/AAAAAAAAD2s/rFAGZ6z5GVIfOEEXQLJmRrW9IiTd8dvEgCLcBGAs/s320/stock-vector-set-of-vintage-cinema-metal-signs-retro-movie-creative-vector-design-concept-227485813.jpg" width="291" id="id_3f64_3b7c_a884_206a" style="width: 291px; height: auto;"></a></div>
Dealing with multiple sclerosis, especially as it advances, can be an all-encompassing, overwhelming pain in the buttocks. We all need our diversions and these can be increasingly hard to find as the disease diminishes access to the outside world, especially during the winter months when wonky limbs and overwhelming fatigue can make it almost impossible to get outside without assistance. Thankfully, in this age of streaming media on electronic gizmos of all shapes and sizes, there’s a seemingly infinite universe of high-quality films and TV shows available for the watching, so watch I do. Nothing like losing yourself in a great flick or binge-watching an engrossing TV series to temporarily keep thoughts of the MS beast at bay.<br>
<br>
Last year I posted a list of some of my favorite, somewhat obscure films (<a href="http://www.wheelchairkamikaze.com/2017/06/some-movie-recommendations.html" target="_blank">click here</a>). I figured it’s about time to put together another such inventory – especially since I’m not in the mood to write yet another essay excoriating the MS status quo or plumbing the depths of my own experience with the disease. Time enough for that later, but for now here’s a list of some of the movies and TV shows I’ve been keeping myself occupied with of late.<br>
<br>
There are a few oldies but goodies sprinkled in here, as well as some foreign fare. For those who are put off by the prospect of subtitles, I’d urge you to give at least one or two of these suggestions a try, as I’ve found that watching foreign flicks is like virtual tourism. I love soaking in the little details and differences of life in foreign lands, from local social customs and dress to such esoterica as the differences in light switches and bathroom fixtures, even if it's only by way of TV screen. Nothing like taking a short trip to Paris or Belgium while sitting in your wheelchair, stuck in your living room wearing nothing but your skivvies. And I promise, if what you're watching is good enough, before you know it you won't even realize that you're reading subtitles.<br>
<br>
Please feel free to comment on any of my selections or to supply a few of your own in the comments section of this post. Enjoy…<br>
<br>
Films:<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-4cUDLfHsQXE/Wl144twEYcI/AAAAAAAAD10/vU82usYoqickUpKHuxhNkHNWfqrG0WxJwCEwYBhgL/s1600/Grand%2BHotel%2BBudapest.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://3.bp.blogspot.com/-4cUDLfHsQXE/Wl144twEYcI/AAAAAAAAD10/vU82usYoqickUpKHuxhNkHNWfqrG0WxJwCEwYBhgL/s200/Grand%2BHotel%2BBudapest.jpg" width="135" id="id_c42f_f19a_867e_84a0" style="width: 135px; height: auto;"></a></div>
<i>The Grand Hotel Budapest </i>– This quirky gem by director Wes Anderson is a sheer delight. A visitor to a long in the tooth but once grand hotel is told an enchanting tale of the venue’s glory days by a stranger he meets in the lobby. The film swoops and swerves as it follows the adventures of the hotel’s once legendary concierge and his sidekick lobby boy as they traverse a fictionalized and fantasized Europe in the time between the two world wars, getting mixed up in all sorts of absurdist escapades along the way. This is kookiness and eccentricity at its best, filled with heart, sentiment, tremendous humor, and a sense of pure revelry. Available to rent from Amazon video.<br>
<br>
<br>
<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-PjcE9XSw5-c/Wl144ps-sdI/AAAAAAAAD2g/QVRl0-ez8MkQcjESNkLzzM-hzyS8J901ACEwYBhgL/s1600/boy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://2.bp.blogspot.com/-PjcE9XSw5-c/Wl144ps-sdI/AAAAAAAAD2g/QVRl0-ez8MkQcjESNkLzzM-hzyS8J901ACEwYBhgL/s200/boy.jpg" width="135" id="id_c13b_ee95_beb2_2afb" style="width: 135px; height: auto;"></a></div>
<i>Boy</i> – from the same director as <i>Hunt for the Wildepeople </i>(Taiki Waititi) – which I recommended in my last list – this charmer from New Zealand is the coming-of-age story of an 11-year-old Michael Jackson obsessed Maori boy as he gets to know his miscreant father, who is just back from a stint in jail. Set in 1984, the film is original and whimsical, heartfelt and idiosyncratic, as we follow the father’s comically obsessive search for ill-gotten money he buried in a field years before, employing the help of his inept outlaw gang and his son’s friends and acquaintances. Included are priceless reenactments of some of Michael Jackson’s most famous videos, including this Maori version of “Thriller.” Available for streaming on Amazon Prime…<br>
<br>
<br>
<center>
<iframe allow="autoplay; encrypted-media" allowfullscreen="allowfullscreen" frameborder="0" height="360" src="https://www.youtube.com/embed/hn-iqH75jqo?rel=0" width="640" id="id_e797_9458_6b67_89e8"></iframe></center>
<br>
<br>
<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-y68kvzRql9o/Wl147tukjRI/AAAAAAAAD2g/_3H7_FAVjOQfmiZUVOjhuuwo32yD4lZ4ACEwYBhgL/s1600/the%2Bswimmer.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://2.bp.blogspot.com/-y68kvzRql9o/Wl147tukjRI/AAAAAAAAD2g/_3H7_FAVjOQfmiZUVOjhuuwo32yD4lZ4ACEwYBhgL/s200/the%2Bswimmer.jpg" width="135" id="id_ac44_3ff8_575e_632a" style="width: 135px; height: auto;"></a></div>
<i>The Swimmer </i>– This all but forgotten 1968 Film is perhaps more pertinent today than when it was made 50 years ago. Starring the great Burt Lancaster as what initially seems to be a gregarious and successful ad man, <i>The Swimmer </i>follows this character as he makes his way across a wealthy Connecticut suburb one beautiful summer day, on a quixotic quest to swim home by stopping in his neighbors’ backyards and doing one lap in each of their pools. At each stop, the reality of the character is slowly revealed, his initial polished veneer stripped away bit by bit. The film explores the shallowness of a consumerist society that defines the value of a human being by the material goods they possess and shines a light on the lies we tell to others as well as the ones we tell ourselves. Based on a John Cheever short story, some of the cinematic techniques used seem a bit dated now, a half century after the film’s production, but the themes it explores and Lancaster’s stellar performance transcend any such quibbles. Available for rent on Amazon video.<div>
<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-WUhAo4BWVJU/Wl147ArjUGI/AAAAAAAAD2g/tswyO82PMhQS4vl8abjlB7O2IBNVe58qACEwYBhgL/s1600/let%2Bthe%2Bright%2Bone%2Bin.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://4.bp.blogspot.com/-WUhAo4BWVJU/Wl147ArjUGI/AAAAAAAAD2g/tswyO82PMhQS4vl8abjlB7O2IBNVe58qACEwYBhgL/s200/let%2Bthe%2Bright%2Bone%2Bin.jpg" width="135" id="id_89ec_53f8_81c5_7ea6" style="width: 135px; height: auto;"></a></div>
<i>Let The Right One In </i>– this Swedish film focuses on a bullied 13-year-old boy who is befriended by his new neighbor, a mysterious 12-year-old girl who he only sees at night, and who sometimes smells a little funny. Okay, I’ll let the cat out of the bag – she’s a vampire, but I would hardly label this a vampire film.<em> Let The Right One In</em> tells a story of affection, devotion, alienation, and manipulation in a stark and intimate way. Although there is some blood spilled along the way, the story is more existentialist than horrific. Beautifully shot and directed, the film is set in a desolate and icy town outside of Stockholm. This is a cerebral film that leaves plenty of room for interpretation and is one of those movies that sticks with you for quite a while after viewing. <i>Let The Right One In </i>was remade in an English version as <i>Let Me In</i>, which is also quite good but a bit more straightforward in the telling than the original. I personally prefer the Swedish version, but the two films are good enough to warrant watching both. Start with the original Swedish version, though, unless you just can’t stand the thought of subtitles. Both films are available for rent on Amazon video.<br>
<br>
<br>
TV shows:<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-vcQPGUOCmdM/Wl145VLRbdI/AAAAAAAAD2g/CZjVVd6gkV8kuDeTm8W7VYGsHKDii658gCEwYBhgL/s1600/broadchurch.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://1.bp.blogspot.com/-vcQPGUOCmdM/Wl145VLRbdI/AAAAAAAAD2g/CZjVVd6gkV8kuDeTm8W7VYGsHKDii658gCEwYBhgL/s200/broadchurch.jpg" width="135" id="id_c4b2_4f87_1d3_f428" style="width: 135px; height: auto;"></a></div>
<i>Broadchurch</i> – this magnificent British crime drama features a big-city police detective with skeletons in his closet who finds himself reassigned to a small coastal town in northern England. The show is three seasons long, with eight episodes per season. Seasons one and two deal with the murder of a young boy and its aftermath, which threatens to tear all involved and the town itself apart at the seams. Season three focuses on the investigation of a sexual assault, while the principles still contend with the emotional fallout of the crime investigated in the first two seasons. This show is about as good as it gets, with acting, tone, and content all achieving perfect pitch. The characters are intricate, the writing spot on, and the scenery itself breathtaking. I can’t recommend<i> Broadchurch </i>highly enough. Available for streaming on Netflix.<br>
<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-M-BVETuL6QU/Wl146gJr66I/AAAAAAAAD2g/vFgHODVELh4fahUolqkWIshMuhn39kslwCEwYBhgL/s1600/hotel.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://1.bp.blogspot.com/-M-BVETuL6QU/Wl146gJr66I/AAAAAAAAD2g/vFgHODVELh4fahUolqkWIshMuhn39kslwCEwYBhgL/s200/hotel.jpg" width="135" id="id_49e8_f6b9_3893_d045" style="width: 135px; height: auto;"></a></div>
<i>Hotel Beau Sejour –</i> I absolutely loved this Belgian show. Kato, an appealing young woman, wakes up to find her own murdered body in the bathtub of an old hotel undergoing renovation. Confused and disoriented, she makes her way back to town and slowly realizes that she is indeed dead, but that five of her friends and family can still see her. Determined to unravel the mystery of her murder (she can’t remember anything from the night of her death), she sets about trying to assist in the solving of the crime as best a ghost can. As Kato struggles to uncover the truth, she discovers the secrets and deceptions of nearly all involved, secrets that even those who hold them are loathe to confront. I found this 10 episode series to be addictive, so much so that binge-watching seemed to be the only option. An added bonus, for me at least, is that the characters speak Flemish, a language I’d never before heard spoken and which seems to be a mix of Dutch, German, French, and English. Again, I’d urge not to let the prospect of subtitles deter you. Though there are some lapses in logic – why does a ghost need to wear a helmet when riding a motorbike? – this is a terrific show. Available for streaming on Netflix.<br>
<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-EdZPI_QT-cY/Wl147hlrfdI/AAAAAAAAD2g/Xyd1DAsZHRssslpjCm6kQ4lU_H-g95QJwCEwYBhgL/s1600/the%2Breturned.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://4.bp.blogspot.com/-EdZPI_QT-cY/Wl147hlrfdI/AAAAAAAAD2g/Xyd1DAsZHRssslpjCm6kQ4lU_H-g95QJwCEwYBhgL/s200/the%2Breturned.jpg" width="135" id="id_ec2c_d434_4ea8_6f1b" style="width: 135px; height: auto;"></a></div>
<i>The Returned – </i>this French series is spooky and disconcerting in the best possible way. Set in a remote French town that has suffered through a series of past tragedies, the community is once again rocked when some of its dead start returning in seeming perfect health and at the same age they were when they died. They have no sense of their own deaths and have no idea how or why they were resurrected. Shot in muted colors that perfectly match the mood of the series, <i>The Returned </i>explores the wounds of what might have been, and whether or not that those who were once given up for lost can ever truly be fully recovered. Throw in the resumption of a series of killings that had stopped years before, and you have the makings of an engrossingly moody Gallic meditation on the circle of life and the nature of good and evil. The show is two seasons long, eight episodes per season, and is available for streaming on Netflix. (Please note, this series spawned several remakes, including an absolutely horrendous American TV network version and a word for word English translation of season one that aired on the A&amp;E network. I haven’t seen the latter, but only one season was produced, so the A&amp;E version does not come to any resolution. This version is also available on Netflix, though, so please make sure to pick the original French version, which was titled <i>Les Revenants</i>).<br>
<br>
<br>
<center>
<iframe allow="autoplay; encrypted-media" allowfullscreen="allowfullscreen" frameborder="0" height="360" src="https://www.youtube.com/embed/m8G7OhlRw7w?rel=0" width="640" id="id_775e_9598_2b87_9a15"></iframe></center>
<br>
<br>
<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-K9UbO2NFPBk/Wl146QV2wPI/AAAAAAAAD2g/dLm0PB9oZOkAUcPWmw36IYWMg96WhAfyQCEwYBhgL/s1600/glitch.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://4.bp.blogspot.com/-K9UbO2NFPBk/Wl146QV2wPI/AAAAAAAAD2g/dLm0PB9oZOkAUcPWmw36IYWMg96WhAfyQCEwYBhgL/s200/glitch.jpg" width="135" id="id_ac47_5cc8_e4bd_98c5" style="width: 135px; height: auto;"></a></div>
<i>Glitch – </i>this is an Australian take on<i> The Returned</i>. It’s a markedly different show than<i> The Returned</i>, absent the moodiness and mystery of the original, but is excellent in its own way.<i> Glitch</i> doesn’t spend much time contemplating the metaphysical ramifications of resurrection, instead placing its focus on the personal histories of seven folks who have clawed their way out of the cemetery of a small western Australian town – most are from different historical periods – and on the science that brought them back. There are some shady characters about, most connected to a suspicious pharmaceutical company located in the vicinity. Each of the resurrected has a fascinating backstory, which they only start remembering in pieces. Much of the show is driven by each character attempting to put together their own personal history and the circumstances of their death. As the show progresses, it becomes more bittersweet than spooky and evolves into more of a thriller than a study in horror or philosophy. Despite its differences from<i> The Returned</i>, both shows had my wife and I hooked early on.<i> Glitch</i> is available for streaming on Netflix, but be forewarned that to date only two seasons have been produced, with the third seemingly still up in the air. The show doesn’t come to any hard resolution, but I found it so enjoyable that it warranted a mention regardless.<br>
<br>
Hope you enjoy some or all of these picks. As mentioned earlier, please feel free to use the comments section to voice your own opinions or offer some viewing suggestions for fellow WK readers.<br>
<br>
<br>
<br>
WHEELCHAIR KAMIKAZE SNEAK PREVIEW: I recently conducted a 90 minute interview with a naturopathic doctor who specializes in treating MS patients. The interview is jampacked with lots of important information and actionable ideas. I should be posting the first part sometime in the next several weeks – I have a lot of transcribing in front of me – and I think this interview will be of great value to WK readers.</div>The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com21tag:blogger.com,1999:blog-3605254543761446258.post-23745926907380682812017-12-31T23:30:00.001-05:002018-01-01T03:53:31.034-05:00New Year’s Eve Through MS Eyes<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i>(This essay was first posted two years ago. Guess this makes it a golden not so oldie, but it's timely and the sentiments expressed will hold true as long as MS remains my unwanted life partner…)</i><br><br></span><img id="id_c91a_1c42_f3c_5e" src="https://lh3.googleusercontent.com/-eyGKllhZ0sA/Wkm5YJolMRI/AAAAAAAAD0s/TXv2j40av5Ug5LOGBFd55eW0khcmM5pSQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 403px; height: auto; margin: 4px; float: right; display: block;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Back in in the days before I got jumped by MS I always loved New Year’s Eve. While many of my fellow habitual night crawlers derided the night’s festivities as “amateur’s hour”, a time when those less accustomed to nocturnal hijinks were apt to get sloppy and make fools of themselves, I embraced the ringing in of the new year con mucho gusto. Never content with just one party for the duration of the night, my friends and I would go on a kind of New Year’s Eve tour, hitting four or five shindigs and nightclubs before heading home well after dawn on January 1. The sentimentality of the holiday, with its tacit promises of sins forgiven and futures bright with hope held me in its thrall. &nbsp;Though I seemed to live in a state of perpetual neurotic dissatisfaction, I also brimmed with expectations that bigger and brighter days were waiting just over the horizon. New Year’s Eve was the one night a year that this heady brew of emotions and expectations were codified into celebration, to be shared with friends and strangers alike.<br><br>For sure, my fondness for the holiday has its roots in my early childhood. My mom and dad divorced when I was three, and for several years after the split my mom and I lived with my grandmother and my unmarried aunt. On New Year’s Eve my young, single mom – who herself loved the nightlife – would head out with her friends into the NYC of the swinging 60s, and my grandmother, aunt, and I would watch Guy Lombardo and his Royal Canadians playing old timey big band hits for the well-heeled crowd at the Waldorf Astoria Hotel, broadcast live to our ragged black and white console TV. We didn’t have much money and lived in a building in the Bronx that was closer to a tenement than a high-rise, but our lack of means did nothing to diminish the excitement and expectations of the evening.<br></span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Though I was only four or five years old, on New Year’s Eve I was allowed to stay up till midnight to take part in a family tradition that stretched back decades. We didn’t have any fancy noisemakers or horns, but at the stroke of midnight, as confetti and balloons floated down on the well to do at the Waldorf and Guy Lombardo’s boys played “Auld Lang Syne”, my grandmother, aunt, and I grabbed sturdy but well-worn metal pots and pans. Then, using big spoons as drumsticks, we burst into the hallway of our apartment building, banging with joyous intensity on those old, scarred cooking implements, creating a raucous racket and shouting at the top of our lungs “Happy New Year’s!” Most of the other residents of the building joined us in creating a jubilant and low rent but somehow defiant cacophony, delirious and intoxicating stuff for the very young me. I daresay that for those few moments we had a lot more fun than the swells at the Waldorf.<br><br>When I grew older, as a young adult I fully embraced the revelry of the holiday. I had quite a few memorable New Year’s Eves in my late teens through my mid 20s, from seeing the new wave band The Waitresses playing a show at 5 AM at the famous Peppermint Lounge to bumming cigarettes from a then barely known Howie Mandel at an MTV “after party” that rollicked on and on as if it might never end. I recall with great fondness stumbling out of a nightclub with a group of deliriously intoxicated friends and madly howling at the moon as the last seconds ticked away on one long ago year. As I transitioned into full adulthood, mixed in with raucous annual celebrations were the occasional intimate, more romantic New Year’s get-togethers with lovers and close friends. No matter the circumstances, though, the night never passed without champagne and good cheer, and always kindled within me expectations of bigger and better things to come.<br><br>Now, nearly 13 years since I was diagnosed with Primary Progressive MS, the night carries with it a much more complex and troublesome mix of emotions. For the first several years after my creeping paralysis struck, while I was still relatively able bodied, my wife and I would host New Year’s Eve parties, more sedate than my revelries of the past but good times nonetheless. Now, with my body increasingly compromised and my stamina waning, even a small gathering of friends can prove taxing. This New Year’s it was just my wife and me watching celebrations from around the world beamed into our living room in high definition on our big-screen TV, images so crisp and detailed it seemed as though I could step right into them. That is, if I could step.<br><br>Despite my best efforts to stay fixed in the moment, I soon found it impossible to watch millions of people celebrating without enviously contrasting their situation with my own. With nary a thought given to their tremendous good fortune at simply having limbs and senses intact, the televised multitudes danced and sang, drank and strutted, laughed and hugged and mingled and voiced exuberant expectations about a future brimming with possibilities. Lubricated by flowing booze and the magic of the night, all could convince themselves that the coming days held better fortunes then those&nbsp;which now belonged to history.<br><br>For the healthy masses, New Year’s Eve crystallizes the reality that the future is but a blank canvas, the images to be painted on it not predetermined but subject to the will of each individual. All but the most intransigent of difficulties will give way to effort, ingenuity, and discipline. Reality is but a construct of the human mind and the emotions it creates, and as such can be born anew once the self-defeating habits of the past are no longer allowed to dictate actions in the present. Not that these kinds of changes are easy, but with sound body and mind anything – anything – is possible. Sadly, it took my getting sick for me to fully understand this, but there is no greater truth.<br><br>And here I sat in a wheelchair – a wheelchair, goddamnit – trying my best to not begrudge the healthy, to vicariously share in at least some of the delirium, to laugh along with them and not let the sneaky tears that kept making their way to the corners of my eyes expose the turmoil that roiled within. There is indeed a reason they call progressive disease progressive. Physically, this last year has been a rough one, with old symptoms getting noticeably worse and new ones breaking the surface. Activities that could be accomplished with relative ease just a year ago are now at times tortuously difficult, and some of those that had been difficult have become damn near impossible. And by activities I don’t mean anything as devilishly complicated as walking or tying a shoe, but rather firmly gripping a fork, or struggling into a sweater, or on bad days, even just staying out of bed for more than four or five hours at a time.&nbsp;<br></span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Unlike those healthy New Year’s Eve revelers on TV, no amount of willpower or change of habits will arrest this bitter physical decline. Though for the most part my spirit stays strong, in the face of this insidious physical onslaught and its accompanying indignities I find it impossible to not at times give way to the weight of it all, having my breath taken away daily by the shocking realization that this is no dream that I can wake from, but instead a concrete reality in which I am being forced to watch myself slowly wither away. The mantra of “staying in the moment” does help to keep me grounded, but there are also times when the moment just sucks. Though I can and do fantasize about a future free from illness, my utter conviction to stare this bastard straight in the eyes lands such fantasies well into the realm of the far-fetched, right there alongside my old dreams of becoming the next Mick Jagger or Philip Roth.<br><br>New Year’s Eve is a time to look back and project forward, and for the healthy this shedding of the old and embracing of the new can be cathartic, if even just for a few hours. This New Year’s brought me no such respite, though, as a look back illuminated the losses suffered these past 12 months, and peering too deep into the future can be perilous, a glimpse at the dark at the end of the tunnel, a glance at an unthinkable void.&nbsp;<br><br>Yet I am not without hope. I keep myself immersed in the latest research and MS news, and though much of it is, quite frankly, garbage, there are approaches that do show promise. Perhaps I am delusional, but even through this morass of illness and increasing disability my resolve to not back down sometimes bends but doesn’t break, even as I acknowledge that merely stabilizing my disease state is at this point quite a longshot. But I know for a fact that sometimes longshots do come in. After all, I’m a guy who once won $15,000 in the Florida lottery, so I’m proof positive that you’ve got to be in it to win it.<br><br>So, as I sat there watching the partiers on TV, wrestling with my complicated and disconcerting mass of emotions, when the clock struck midnight I chugged some champagne and kissed my wife, while my inner five-year-old banged on pots and pans and screamed at the top of his lungs, “Happy New Year’s!”…</span><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><br><iframe src="https://www.youtube.com/embed/Z3sXVxqDbFk" width="640" height="360" id="y_id_7a61_b837_2c60_827c" frameborder="0"></iframe><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div>The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com16tag:blogger.com,1999:blog-3605254543761446258.post-75470763420739162742017-12-20T23:43:00.002-05:002017-12-22T05:08:56.848-05:00All I Want for Christmas Is a Cure for This Damned Disease!<i> (For those receiving this via email, the following post contains videos which can't be viewed in email clients. Please visit the Wheelchair Kamikaze blog page to view videos (<a href="http://www.wheelchairkamikaze.com/2017/12/all-i-want-for-christmas-is-cure-for.html" target="_blank">click here</a>).) </i><br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-sVw5tU9ADj4/Wjs2-QjpL3I/AAAAAAAADzU/F8R5-hgoDzAaka7iwJl6ilDDcCt04QsMwCLcBGAs/s1600/angry%2BChristmas.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="720" data-original-width="1179" height="243" src="https://3.bp.blogspot.com/-sVw5tU9ADj4/Wjs2-QjpL3I/AAAAAAAADzU/F8R5-hgoDzAaka7iwJl6ilDDcCt04QsMwCLcBGAs/s400/angry%2BChristmas.jpg" width="400" id="id_6ca_db98_df59_1e18" style="width: 400px; height: auto;"></a></div>
I had a slight meltdown while serving as a semi-official MS patient advocate last week. Please let me explain…<br>
<br>
I was invited to take part in a conference call organized by a significant multiple sclerosis consortium. The group is planning an MS conference which will take place over several days, with one of the days devoted to patients and patient education. My purpose on the call, along with several other patient advocates, was to help decide which seminar topics would be most interesting and useful for patient attendees of the planned meetings. In advance of the call I was supplied with a list of potential subjects and was told to be ready to choose which I thought should be included as part of the conference program.<br>
<br>
As I perused the list, which included items such as "2018 MS Drug Pipeline" and "Mindfulness and MS", I found myself surprised and then increasingly angered by one glaring omission: there was no mention at all about the search for a potential cure for MS. This annoyed me to no end. After all, shouldn’t one of the primary goals of every MS Association, researcher, and neurologist be figuring out how to put themselves out of business by curing this damned disease? I thought it quite telling (and nauseating) that the planners of this MS conference hadn’t thought enough of this subject to even include it as part of the equation.<br>
<br>
Despite assurances to myself that I would remain calm during the conference call, once it came my turn to speak I just couldn’t help myself. What began with my evenly pointing out that the prospect of a cure had somehow been overlooked quickly devolved into a sputtering, barely coherent chastisement of the entire MS medical establishment. Let’s not forget, the field of MS neurology was not so long ago considered a medical backwater, but has since been transformed into one of the biggest cash cows in all of modern medicine, all on the backs of outrageously expensive pharmaceutical products that may curtail disease activity but do absolutely nothing at all to cure MS.<br>
<br>
Is this really where the MS status quo now resides? A place where we must accept that disease management is the best we’re going to get? Where patients struck with a hideous illness should be content or even grateful that the modern medical divinities have graced some of them with the ability to keep their potentially crippling malady in check for who knows how long? Where the torrents of cash generated by insanely priced drugs have so corrupted the MS establishment from top to bottom that the prospect of a cure seems unfit for conversation in polite company – why, for fear of spooking the goose that lays perpetual golden eggs? And what about those of us with progressive disease, who now have a whopping total of one approved drug that might, just might, slow the insidious decline of a subset of us by a less than dazzling 20%-25%? I readily admit that the disease modifying drugs currently available do dramatically improve the quality of life for many of the patients taking them– they also carry with them long lists of frightening and sometimes fatal side effects – but they do nothing at all towards stomping out MS.&nbsp;Forgive me for not genuflecting at the feet of the MS gods. How about this? Come up with a drug that cures my creeping paralysis&nbsp;and I’ll genuflect my ass off.<br>
<br>
Some of the other patients on the conference call responded to my little tirade by saying that they’d given up hope for a cure in their lifetime. Though I do understand the frustration that lies at the root of this sentiment, to that I respectfully say “bullcrap”! Each of the top-selling MS drugs generates profits measured in billions of dollars per year; you’d think that some of that money might be spent looking for the cause of and then cure for multiple sclerosis. Instead, we have pharmaceutical companies devoting&nbsp;more money to&nbsp;marketing than to&nbsp;research (<a href="https://www.washingtonpost.com/news/wonk/wp/2015/02/11/big-pharmaceutical-companies-are-spending-far-more-on-marketing-than-research/?utm_term=.8869c673b296" target="_blank">click here</a>), and the funds that are spent on research are almost exclusively directed&nbsp;towards finding newer and better ways of manipulating the human immune system. NEWSFLASH TO MS RESEARCHERS: the aberrant immune response seen in MS patients is not the cause of the disease, it’s a symptom of some much deeper ill. Though the following analogy may be a bit of a stretch, treating MS by suppressing the immune system is like treating a broken leg with painkillers. It may make the patient feel better, but it doesn’t do a damned thing towards fixing the underlying problem.<br>
<br>
At this point, you might rightfully ask, so, Mr. Smarty-Pants, if you’re so clever and smug and full of yourself, where would you suggest we start this quest for an MS cure? Well, I’m glad you asked. Even though I’m not a physician or researcher, I think I have a few good ideas. Here are just some of them:<br>
<br>
<ul>
<li>We’ve known for years that the Epstein-Barr virus is somehow implicated in the MS disease process. In fact, there seems to be such a close relationship between EBV and MS that some researchers have gone so far as to state that if a person doesn’t have EBV, they don’t have MS (<a href="https://www.webmd.com/multiple-sclerosis/news/20090504/epstein-barr-virus-linked-to-ms#1" target="_blank">click here</a>). Certainly, EBV alone doesn’t cause MS, but in conjunction with specific genetic predispositions, it may just be the fire starter. We now have the ability to map patients’ genomes, so shouldn’t there be at least a few researchers laser-focused on understanding the interaction between EBV and patient genetic profiles in an attempt to get to the guts of the problem? At the very least, a comprehensive database of the genetics of MS patients should be started posthaste so that gene variants and epigenetic changes can be detected and identified.</li></ul>
<ul>
<li>It’s been observed that HIV patients taking powerful antiretroviral drugs seem to develop MS in far lesser numbers than the general population (<a href="https://www.mstrust.org.uk/research/research-updates/update140811-HIV-drugs-treatment-for-MS" target="_blank">click here</a>) and that HIV patients who already have MS often see their disease go into nearly complete remission once starting these drugs (<a href="http://www.bbc.com/news/uk-england-sussex-34659771" target="_blank">click here</a>). Again, why isn’t this a subject for intense scrutiny? Especially since one of the most commonly used anti-HIV drugs, AZT, has been shown to have anti-EBV properties (<a href="https://www.ncbi.nlm.nih.gov/pubmed/2834997" target="_blank">click here</a>)? Please note, there was one trial of an anti-HIV drug, Raltegravir, on MS patients. This trial failed, but Raltegravir does not effect EBV.</li></ul>
<ul>
<li>HSCT, the form of stem cell therapy that first eradicates an MS patient’s immune system with strong chemotherapy drugs and then reboots it via stem cell transplant has been shown to put properly selected multiple sclerosis patients into long-term remission (<a href="https://www.msif.org/news/2017/05/03/long-term-outcomes-ahsct-ms/" target="_blank">click here</a>). Shouldn’t these patients be carefully tracked and tested to see just why this treatment can be so incredibly effective? Is it simply that their reconstituted immune systems are no longer autoreactive, or might there be some other reason? Does HSCT not only put MS into remission but actually cure it, with those patients who see a resumption in disease activity somehow developing MS anew after coming into contact with some environmental trigger? The fact is that Epstein-Barr virus, when dormant, resides in immune system B cells which are wiped out during the chemotherapy-induced eradication of patient’s immune systems at the start of the HSCT process. This means HSCT rids the body of EBV. Does this allow the genetic triggers of the disease to then reset, putting a halt to the autoimmune process? A shot in the dark, maybe, but one worth examining…<br><br>
</li>
<li>Researchers at Harvard are currently studying the use of a century-old tuberculosis vaccine, called the BCG vaccine, to treat patients with type I diabetes, an autoimmune disease. They are reporting remarkable success, completely reversing the disease in some patients (<a href="https://www.bizjournals.com/boston/news/2017/06/10/mgh-study-shows-vaccine-could-permanently-reverse.html" target="_blank">click here</a>). Apparently, the BCG vaccine works on both the immune system and on the genetic level, and thus could theoretically be of use not only in type I diabetes but across a broad spectrum of so-called autoimmune diseases. In fact, before the introduction of the MS disease-modifying drugs, there was promising research into the use of BCG to treat MS (<a href="https://www.ncbi.nlm.nih.gov/pubmed/10534275" target="_blank">click here</a>), which seems to have been abandoned once money started rolling in from the first MS drugs. Why devote research monies to a 100-year-old vaccine that costs relative pennies when gazillions of dollars can be generated developing a never-ending stream of boutique drugs that profoundly alter the workings of the human immune system, the long-term ramifications of which are entirely unknown? As Deep Throat told Woodward and Bernstein, follow the money…</li>
</ul>
<br>
Okay, in the parlance of corporate speak, I’ve just spitballed a few ideas on which MS researchers devoted to finding a cure for the disease might focus their considerable brainpower. Of course, many of these ideas don’t have near-term blockbuster profit potential, so in the upside down world of pharmaceutical company driven medical research, they likely won’t get much attention. I’ve said it before, and I’ll say it again – capitalism is a wonderful system for creating wealth, but the marriage of capitalism and medicine is proving to be an unholy one. As long as profits take precedence over patients, as is currently the case, cures for any diseases will be rare beasts indeed.<br>
<br>
MS organizations should never lose sight of the fact that their prime directive should be hastening their own demise by contributing to the effort to find a cure for the disease. The current status quo must not stand, and patients should not stand for it. I for one will not shut up about this topic, no matter how nuts it may make me seem to those less inclined to histrionics. If MS patients themselves don’t demand better, we will never get better, both figuratively and literally.<br>
<br>
Oh, yeah, Happy Holidays! <br>
<br>
<center>
-----------------------------------------------------------------------------------------------------------------------------------------</center>
<br>
Since it is the season of giving, please allow me to recommend two MS nonprofits that are very worthy of your and your families’ and friends’ donations. I’m not suggesting the National Multiple Sclerosis Society, as, quite frankly, they have a vast contribution generating machine that sucks up lots of the cash that might be better directed at smaller MS organizations. Given the topic of this essay, I’m recommending two groups that are striving to find a cure for multiple sclerosis.<br>
<br>
The first is the Tisch Multiple Sclerosis Research Center of New York (<a href="http://www.tischms.org/" target="_blank">click here</a>), which is currently in the process of building the largest stem cell laboratory devoted strictly to stem cells for MS, and will soon be starting the only FDA approved phase 2 stem cell trial on PwMS. In addition, the Tisch Center is involved in a wide range of groundbreaking research, from identifying MS biomarkers to understanding the root cause or causes of the disease, without an understanding of which there can be no cure.<br>
<br>
My second pick is the Accelerated Cure Project (<a href="https://www.acceleratedcure.org/" target="_blank">click here</a>). The ACP is currently focused on the iConquerMS project, a crowdsourced database of information supplied by MS patients that will give researchers worldwide the opportunity to detect patterns and trends in the MS population that very well could provide the clues needed to come up with a cure for the disease. In addition to donating to the ACP, if you’re not already a participant in the iConquerMS project, I urge you to visit their website (<a href="https://www.iconquerms.org/" target="_blank">click here</a>) and start participating by answering some quick surveys. This is a patient-driven research effort and gives you a chance to join in the search for a cure.<br>
<br>
<center>
-----------------------------------------------------------------------------------------------------------------------------------------</center>
<br>
Finally, here’s a little Christmas present to my dear readers. The following clips are from the exquisite but little-known 1995 film “Smoke”, one of my faves.. Despite the fact that there are no explosions or car crashes, this one of my favorite scenes in all of filmdom, just one friend telling another a compelling Christmas story. Is the story true or made up, and does it matter? The scene features a masterful performance by the great Harvey Keitel playing opposite William Hurt, and touches on just about everything that makes Christmas and human beings such endlessly fascinating subjects.<br>
<br>
Please watch both clips to get the full effect (I recommend viewing full-screen), as I couldn’t find a single clip that encompasses the entire sequence. As an added bonus, the sequence finale features one of my favorite Tom Waits songs, Innocent When You Dream. If you’re interested in watching Smoke in its entirety, it’s available for streaming on Amazon (<a href="https://www.amazon.com/dp/B0062ABRDQ?ref_=imdbref_tt_wbr_aiv&amp;tag=imdbtag_tt_wbr_aiv-20" target="_blank">click here</a>). Enjoy!<br>
<br>
<br>
<center>
<iframe allow="encrypted-media" allowfullscreen="allowfullscreen" frameborder="0" gesture="media" height="360" src="https://www.youtube.com/embed/_kCUbw8Ug28?rel=0" width="640" id="id_9d2d_25f6_6cd2_bb0d"></iframe></center>
<br>
<br>
<br>
<br>
<center>
<iframe allow="encrypted-media" allowfullscreen="allowfullscreen" frameborder="0" gesture="media" height="360" src="https://www.youtube.com/embed/97IrbTlPxUc?rel=0" width="640" id="id_383f_a76e_b4a3_2147"></iframe></center>
The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com39tag:blogger.com,1999:blog-3605254543761446258.post-48060574078066909722017-11-22T00:38:00.000-05:002017-11-28T12:40:23.454-05:00Happy No-Thanksgiving!<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-iHaHuvqapfk/WhUJlGoMbxI/AAAAAAAADwg/9EMC26JbNLEKasFCSdZPKY_fA6jbe_5XgCLcBGAs/s1600/no%2Bthanks.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="240" data-original-width="240" src="https://3.bp.blogspot.com/-iHaHuvqapfk/WhUJlGoMbxI/AAAAAAAADwg/9EMC26JbNLEKasFCSdZPKY_fA6jbe_5XgCLcBGAs/s1600/no%2Bthanks.jpg" id="id_8fea_bbba_56c8_2f30" style="width: 240px; height: auto;"></a></div>
Well, this year I’m in no mood for Thanksgiving. Quite frankly, the state of my life, health, and the world in general has me feeling grumpier than a starving vegan in a steakhouse. Between being increasingly decimated by a progressively crippling disease, forced to witness a nation and a planet gone mad and suffering through the worst fantasy football season I’ve had in over a decade, I find myself more inclined this year to say “no thanks” than “thanks.” So, I’ve decided to invent my own little holiday: No-Thanksgiving, a day when one can feel free to share their disdain and disgust with freedom and pride.<br>
<br>
No-Thanksgiving coincides precisely with Thanksgiving, so those who find themselves forced this Thursday to sit around a table of people gushing with gratitude while feeling only varying shades of repulsion are hereby granted license to let loose with a bile laced torrent of grievances when it comes your turn to speak. You’ll feel a whole lot better, and you can tell the others at the table – as they look at you horrified in slack-jawed bewilderment – to pull up their big boy pants and just carve the freaking bird. And then you must swallow some air and unceremoniously burp out a hearty “Happy No-Thanksgiving!”. A burped “Happy No-Thanksgiving” is the only mandatory ritual required of those celebrating this new holiday.<br>
<br>
So, what am I especially not thankful for this year? Oh, let the litany begin…<br>
<br>
I am aghast at the list of famous and powerful men who have proved to be harassers and sexual abusers of women, a register that seems to grow daily like an ignored melanoma. Granted, some of the grievances committed are worse than others – in my mind, there is a world of difference between cupping someone’s butt and sexually touching a 14-year-old – but none can be considered acceptable behavior. These ongoing revelations have led me to ponder questions I never imagined I’d formulate, such as how much satisfaction can there be in forcing somebody to watch you masturbate? Back when I was healthy and single, the thrill of finding a new partner lay largely in the fact that she actually liked me. When introduced to a beautiful woman I never once had the slightest urge to corner her in a private space with the intent of forcing her to watch me&nbsp;pull out my Wee Willie Banjo and start strumming a tune. Definitely not my idea of making beautiful music together.&nbsp;The fact that women subjected to such spectacle didn’t immediately projectile vomit on the men in question is testament to the strength of the female gender. A pox on all of these degenerates, along with an especially nauseated “no thank you.”<br>
<br>
I am horror-struck at the destructive power of my disease, which knows no bounds and defies any attempts to arrest it. This thing is Godzilla, and my life is Tokyo. It doesn’t help that during the last few months I’ve been hit with a series of flu bugs and other viruses, which are to multiple sclerosis as fine hooch is to a recovering alcoholic clinging to the edge of the wagon. The frightening thing about my getting sick with any kind of bug is that the resulting physical carnage always proves to be a preview of things to come in the not-too-distant future of my disease’s relentless progression. I’ve often surprised myself and others with my stoicism in the face of hurricane MS, but I must admit there have been moments these last few months that have left me scared shitless. Not being able to get myself in or out of bed, control my bladder, or summon up the strength to push a fork through a piece of broccoli are not exactly harbingers of a rosy future. Note to my doctors or any other doctors who happen to be out there: help! And to my disease: an emphatic no thank you!<br>
<br>
I am driven to distraction – literally, I can’t sleep – over the abominable tax plan being rammed down the throats of the American people by Congress. I’ve always tried to keep politics off of these pages, but not speaking out against the abhorrent is the worst kind of cowardice. And these tax proposals, as currently constituted, are most certainly abhorrent. Putting aside the fact that they are yet another attempt at supply-side economics, a theory which has never, ever proven successful whenever it’s been implemented – “But, but, Reagan!” I can hear some sputtering, conveniently forgetting that President Reagan raised taxes 11 times after he initially cut them (<a href="https://www.cbsnews.com/news/ronald-reagan-myth-doesnt-square-with-reality/" target="_blank">click here</a>) – what is really unsettling me is the fact that by all objective estimates the current tax proposals will increase the federal deficit by between $1 trillion and $2 trillion (<a href="http://budgetmodel.wharton.upenn.edu/issues/2017/11/13/the-house-tax-cuts-and-jobs-act-amended-11917-the-dynamic-effect-on-the-budget-and-the-economy" target="_blank">click here</a>, <a href="http://www.taxpolicycenter.org/publications/macroeconomic-analysis-tax-cuts-and-jobs-act-passed-house-representatives" target="_blank">here</a>, and <a href="https://files.taxfoundation.org/20171115144820/Tax-Foundation-SR239-HOUSE-TCJA1.pdf" target="_blank">here</a>). This very likely will trigger mandatory cuts to Medicare (<a href="https://www.wsj.com/livecoverage/tax-bill-2017/card/1510696375" target="_blank">click here</a>), and I fear will eventually be used as an excuse for yet another misguided push to privatize Social Security, Medicare, and Medicaid. The combined effects of these changes would leave millions of the most vulnerable Americans – the elderly, chronically ill, and disabled – without the social safety net they so desperately need. There is no doubt that the US is in need of tax reform, and getting through the process will always be as pleasant as a national root canal, but the hyper-partisan tax proposals now on the table should be anathema to all reasonable Americans. So, with all the strength I can muster, I shout “no thanks” to the current version of tax reform. If you agree, call your Representatives and Senators at <a dir="ltr" href="tel:(202)%20224-3121" x-apple-data-detectors="true" x-apple-data-detectors-type="telephone" x-apple-data-detectors-result="0">(202) 224-3121</a>.<br>
<br>
I am a horribly disillusioned by modern medicine as it is currently practiced, rife with conflicts of interest and cynical calculations that put profits over people. Due to the explosive growth in the cost and profitability of pharmaceutical drugs, it seems the goal of modern medicine has become treating rather than curing, a model which is great for Big Pharma but sucks elephants for those of us saddled with horrible diseases. The eye-popping amounts of money generated by drugs that treat but don’t cure have insidiously transformed the landscape of medicine from top to bottom. The medical journals, increasingly reliant on Big Pharma monies for their survival, predominantly publish studies favorable to pharmaceutical company interests. These studies are usually conducted by researchers who are on the payroll of the companies whose drugs they are studying. The doctors reading these published studies are in turn very often paid handsomely in the form of shady speaking and consulting fees by the very pharmaceutical companies whose products they prescribe. In any other industry people would go to jail for this kind of crap, but in medicine, where they can perhaps do the most harm, these practices are now considered business as usual. For an insightful article on just how pernicious these shenanigans can be, (<a href="https://www.washingtonpost.com/business/economy/as-drug-industrys-influence-over-research-grows-so-does-the-potential-for-bias/2012/11/24/bb64d596-1264-11e2-be82-c3411b7680a9_story.html?utm_term=.db18fc93cbb2" target="_blank">click here</a>). So, come this Thursday’s No-Thanksgiving I will include the entire medical establishment high on my list of no thank you’s…<br>
<br>
I’ll end my list here due to time constraints, though in my current state of disgruntlement I could easily extend it ad infinitum. No-Thanksgiving day will soon be upon us, and it wouldn’t make much sense to publish this article once the day has passed. I’d ask all who wish to join me in celebrating this new holiday to refrain from throwing a drumstick at your idiot uncle and instead help to grow the popularity of No-Thanksgiving day by providing a list of your own candidates for “no thank you’s” in the comments section of this essay. Come on, give voice to all of your pent-up grievances, grudges, and gripes so that all of your fellow MS curmudgeons can revel in your misanthropic meanderings!<br>
<br>
To all my wonderful Wheelchair Kamikaze readers, I wish you a tremendously Happy No-Thanksgiving! And a Happy Thanksgiving to the more well-adjusted among us…The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com44tag:blogger.com,1999:blog-3605254543761446258.post-67736484362955512432017-11-01T23:39:00.001-04:002017-11-02T05:04:57.294-04:00WK Honored – And You Can Get A Free Comprehensive Health Panel Test!<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-fSJ-jW-STCU/WfqQ9Y21zHI/AAAAAAAADus/t-MazsuHaRkIK3KVfW0lcHaiiwGAARKNQCLcBGAs/s1600/healthlabs-badge-8.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="208" data-original-width="211" src="https://1.bp.blogspot.com/-fSJ-jW-STCU/WfqQ9Y21zHI/AAAAAAAADus/t-MazsuHaRkIK3KVfW0lcHaiiwGAARKNQCLcBGAs/s1600/healthlabs-badge-8.png" id="id_3f03_c61c_b688_511c" style="width: 211px; height: auto;"></a></div>
I’m pleased to announce that Wheelchair Kamikaze has been named one of Healthlabs.com’s top 25 MS blogs (<a href="https://www.healthlabs.com/top-25-ms-blogs" target="_blank">click here</a>). WK nabbed the fifth spot on the list, just behind the blogs of such huge organizations as the National Multiple Sclerosis Society, the UK’s MS Society, and the Multiple Sclerosis Association of America. While this is a tremendous honor, the best part is that Healthlabs.com is offering all US-based Wheelchair Kamikaze readers a free Comprehensive Health Panel, including blood tests and urinalysis.<br>
<br>
Wheelchair Kamikaze has achieved success beyond anything I ever could’ve dreamed when&nbsp;I started these pages back in 2009. I honestly never expected more than a few dozen people to ever give this blog a gander. Now, nearly 9 years later, WK is approaching 3 million page views. Amazing. Heartfelt thanks to all Wheelchair Kamikaze readers, and of course to Healthlabs.com.<br>
<br>
Tremendous congrats go to all the other blogs that Healthlabs’ list. Each selected blog is high-quality, entertaining, and informative, and I urge you to check each of them (<a href="https://www.healthlabs.com/top-25-ms-blogs" target="_blank">click here</a>). Healthlabs.com has provided very informative synopses of each, so their list of chosen blogs is a valuable resource in and of itself.<br>
<br>
Now, for the really good stuff –&nbsp; Healthlabs.com is generously offering free comprehensive health test panels (a $99 value – <a href="https://www.healthlabs.com/comprehensive-health-testing" target="_blank">click here</a>) to all US-based Wheelchair Kamikaze readers. This health test panel includes blood tests for lipids (cholesterol levels), a comprehensive metabolic panel, iron and total iron binding capacity tests, a thyroid panel, and a complete blood count (CBC), as well as a urinalysis. <br>
<br>
If interested, please use the following instructions for accessing your free Comprehensive Health Test Panel:<br>
<br>
1. Wheelchair Kamikaze readers can place their orders over the phone by calling <a dir="ltr" href="tel:1-800-579-3914" x-apple-data-detectors="true" x-apple-data-detectors-type="telephone" x-apple-data-detectors-result="5">1-800-579-3914</a> . Please mention that you are calling about the free Comprehensive Health Test Panel for Wheelchair Kamikaze readers.<br>
<br>
2. Healthlabs.com’s certified health care specialists will order a Comprehensive Health Test Panel for you free of charge over the phone. <br>
<br>
3. Once the test is ordered, readers can simply use the lab nearest them. Healthlabs.com has a partnership with Quest Diagnostics, so users can get tested at any of 2,000 labs across the United States. Most labs are open during regular business hours, and no appointment is necessary. Readers can use Healthlabs.com’s "Find a Lab" tool (<a href="https://www.healthlabs.com/find-a-lab" target="_blank">click here</a>) to find the lab nearest them. <br>
<br>
4. Results are delivered by email in 1-2 business days. <br>
<br>
This offer expires on November 1, 2018.<br>
<br>
I’d asked anybody taking advantage of this offer to please leave a few words about their experience in the comments section of this post. I’d like to keep track of how well the process goes.<br>
<br>
Once again, a big thank you to Healthlabs.com and to all the readers that have made Wheelchair Kamikaze a popular part of the MS Internet. I’m humbled to have been able to be of service through the years to my fellow members of the MS club, one which none of us ever wanted to join. You’ve all given me some method to the madness of my experience with this disease. For that, I will forever be grateful.The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com13tag:blogger.com,1999:blog-3605254543761446258.post-55509983503313433452017-10-16T01:21:00.000-04:002017-10-16T10:08:48.752-04:00Navigating the MS Internet: Useful Websites and Some Words of Caution<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-3A4xo3nozhQ/WeQ_SWd5UqI/AAAAAAAADtM/QMXlTzmLuSE69jBH75TKoj-E-YdaRZdpgCLcBGAs/s1600/global-internet-blog.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="794" data-original-width="1413" height="178" src="https://4.bp.blogspot.com/-3A4xo3nozhQ/WeQ_SWd5UqI/AAAAAAAADtM/QMXlTzmLuSE69jBH75TKoj-E-YdaRZdpgCLcBGAs/s320/global-internet-blog.jpg" width="320" id="id_7b59_a5e6_9f5a_8336" style="width: 320px; height: auto;"></a></div>
Back when I was first diagnosed in 2003, the Internet was a far different place. Facebook and Twitter had yet to be invented, and Apple’s first iPhone was still four years away. As a newly minted MSer, I plunged headlong into what now seems like a relatively barren virtual landscape seeking information about the disease and interaction with other patients dealing with it. I found some MS web forums (often called bulletin boards back then), and a handful of MS themed blogs, along with some general medical information sites that made some mention of multiple sclerosis. <br>
<br>
Flash forward 14+ years, and, my, what a difference. For better or worse, Facebook has become the giant elephant in the room, the amount of MS blogs has exploded, and informational resources are plentiful. What follows is what I hope will be a handy-dandy guide to getting the most out of the modern MS Internet, along with some cautionary words about some of the dodgy information (or misinformation) that is now so easy to come across.<br>
<br>
For those like me, hungering for the latest and greatest in MS news, it’s much easier to have such tidbits find you rather than you find them. How to achieve such Internet wizardry? Easy, just sign up for news alerts and daily newsletters from any number of reliable MS sites. One of the most effective ways of having a wide variety of MS news – from puff pieces to hard research – delivered straight to your email inbox is to sign up for Google news alerts (<a href="https://support.google.com/websearch/answer/4815696?hl=en" target="_blank">click here</a>). I have my alerts set up to flag any news items including the words “multiple sclerosis,” and I get a daily email compilation of MS-related articles from around the world delivered directly to me courtesy the Google Internet mystics. Easy peasy lemon squeezy. <br>
<br>
Other sites that provide reliable MS information and allow you to sign up for email newsletters include Multiple Sclerosis News Today (<a href="https://multiplesclerosisnewstoday.com/" target="_blank">click here</a>), and MS Views and News (<a href="http://www.msviews.org/msviewsandnews4/" target="_blank" id="id_720d_4895_752d_367c">click here</a>). For those who enjoy a deep dive into the latest MS research, there’s The MS Research Blog (<a href="http://multiple-sclerosis-research.blogspot.com/" target="_blank">click here</a>), which is published by the MS neurologists and researchers at the Barts and London medical school in Great Britain. Simply sign up in the “Follow By Email” space provided on the blog, and you’ll get their posts right to you on a daily basis.<br>
<br>
Other sites that provide a wealth of MS info and resources include: the National Multiple Sclerosis Society (<a href="https://www.nationalmssociety.org/" target="_blank">click here</a>), the Multiple Sclerosis Association of America (which provides not only info but material help for those MSers in financial need – <a href="https://mymsaa.org/" target="_blank">click here</a>), the MS international Federation (<a href="https://www.msif.org/" target="_blank">click here</a>), Healthline.com (<a href="https://www.healthline.com/" target="_blank">click here</a>), and ActiveMSers (provides info and motivation about staying physically and intellectually active despite having MS – <a href="http://www.activemsers.org/home.html" target="_blank">click here</a>).<br>
<br>
For those seeking interaction with other MSers, there are a wide variety of online MS communities that offer excellent venues for information sharing and patient to patient camaraderie. Most of these are moderated by folks with medical backgrounds, and they don’t discourage posts from people with differing viewpoints, unlike many of the dedicated MS groups on Facebook – but more on that later. Among the oldest of these online communities is the venerable MSWorld (<a href="http://www.msworld.org/forum/" target="_blank">click here</a>), which was one of the first MS forums I discovered over 14 years ago when I was first diagnosed. The site has become much more multifaceted in the intervening years, and I’d encourage all patients to give it the once over twice. Other vibrant online MS communities include Shift.ms (<a href="https://shift.ms/?gclid=CjwKCAjwyIHPBRAIEiwAHPS-GD9nZ2oJ03CEZDk2DDFwQrvISbQx2bwz_TwHqyMcaNKIb_Stdncr3RoCQqYQAvD_BwE" target="_blank">click here</a>), the NMSS’s MS Connections (<a href="http://www.msconnection.org/" target="_blank">click here</a>), and My Counterpane (<a href="https://www.mycounterpane.com/home/getting-started" target="_blank">click here</a>), a unique MS community that encourages members to track their moods, post videos, and provides fodder for thought and conversation. ThisIsMS is another older forum that is a great place to discuss MS research and treatment protocols, as well as general MS topics (<a href="http://www.thisisms.com/forum/" target="_blank">click here</a>). The British MS Society’s forums are another welcoming venue (<a href="https://community.mssociety.org.uk/forum" target="_blank">click here</a>). <br>
<br>
For those looking for an MS-specific social networking app for smartphones and tablets, there’s Healthline’s MS Buddy (Android-<a href="https://play.google.com/store/apps/details?id=com.healthline.msbuddy&amp;hl=en" target="_blank">click here</a>, Apple-<a href="https://itunes.apple.com/us/app/ms-buddy-multiple-sclerosis/id1040195462?mt=8" target="_blank">click here</a>), which will match you up with a different fellow MSer every day, with whom you can chat, exchange experiences and information, and hopefully become friends. Healthline is currently in the process of expanding the features of the app, and it’s well worth the download.<br>
<br>
iConquerMS (<a href="https://www.iconquerms.org/" target="_blank">click here</a>) allows MS patients to participate in a crowdsourcing research project. By answering a series of surveys, patients contribute to a vast database of MS related information that can be tapped by MS researchers worldwide. This is an extremely important initiative, and the site offers benefits to those who participate. I strongly urge all Wheelchair Kamikaze readers to become members of the iConquerMS&nbsp;community.<br>
<br>
Back when I started Wheelchair Kamikaze in 2009, there were already quite a few MS blogs taking their place in the blogosphere (without doubt one of the ugliest words in the English language), but now there are so many it’s almost impossible to keep up. Happily, the site MultipleSclerosis.net (<a href="https://multiplesclerosis.net/" target="_blank">click here</a>) features articles by many popular MS Bloggers and writers, yours truly included. You’ll find a wide variety of articles and info on MS.net, from the latest MS research to highly personal essays, all written by patients with MS or their caregivers. Honestly, this site is a must read and can keep you busy for hours each day.<br>
<br>
Okay, now let’s discuss Facebook, that multi-tentacled entity intent on world domination that for many people is the Internet. As you may have guessed, I’m not a big fan of Facebook, for a plethora of reasons. Of course, I do understand Facebook’s appeal and its value as a place for keeping in touch with old friends and meeting new ones, engaging in social tribalism, reveling in confirmation bias, reading totally fictitious news items presented as fact, and taking online personality tests. BTW, I’m an ultra-intuitive old soul super genius with an encyclopedic knowledge of art, history, geography, literature, science, grammar, vocabulary, and spellling. Also, my spirit animal is the Australian Pimple Beast and the color of my aura is purple. Oh, and Judge Judy is my celebrity soulmate.<br>
<br>
When it comes to multiple sclerosis, though, my real beef with Facebook is the insane amount of misinformation, disinformation, and hyperbole that gets passed around as fact in many if not most MS Facebook groups, particularly those devoted to one treatment protocol or another. This is especially true in groups dedicated to treatments that are considered alternative, such as HSCT, CCSVI, the Coimbra protocol, etc. I don’t mean to disparage any of these treatments, as I believe it’s vitally important to keep an open mind when it comes to new and different MS treatment approaches. I am in fact a big proponent of HSCT, for properly selected patients, and have written extensively on the subject (<a href="http://www.wheelchairkamikaze.com/2015/06/recent-research-on-hsct-stem-cell.html" target="_blank">click here</a>).<br>
<br>
The problem with much of the MS info on Facebook lies predominantly in the fact that most if not all of the treatment related FB groups are founded and moderated by folks who believe in their chosen treatments with an evangelical zeal, or, more nefariously, by organizations offering such treatments for mucho dinero. Quite often, the keepers of these groups don’t countenance any sort of dissenting viewpoint or set of facts that don’t jibe with the party line, and actively discourage or even ban those with the temerity to point out glaring errors in fact and reason.<br>
<br>
I recently had an email discussion with Dave Bexfield, an MS Activist who maintains the ActiveMSers website, about the problems we’ve both encountered trying to inject some sort of objectivity into these groups. His experiences closely mirror mine, with the added dimension that Dave has undergone HSCT treatment himself. He offered the following account of his experience trying to tell his story on some of the HSCT Facebook groups. I’m sharing Dave’s words with his permission: <br>
<br>
<em>“Sadly, it's virtually impossible to counter MS misinformation on Facebook, and HSCT—a treatment that saved my life in 2010, but ultimately did not stop the progression of my disease – is a perfect example. Rational, balanced discussions are drowned out by cheerleaders armed with "facts" that are little more than personal opinion. It's gotten so bad that MS researchers have complained to me personally that while some of the info on these fan sites is correct and informative, as much as a third is just wrong, outdated or even fabricated. What to do? I've finally stopped trying to correct people on social media to avoid the inevitable flame wars. It was unpleasant wearing the "black hat" of truth and playing the role of a human piñata.”</em><br>
<br>
For those interested in learning more about Dave’s experience with HSCT, shift.MS has published a series of short video interviews with him on the subject (<a href="https://shift.ms/msreporters-expert/dave-bexfield" target="_blank">click here</a>). Highly recommended viewing for anybody investigating this form of treatment.<br>
<br>
Suffice it to say, my experiences with a variety of Facebook treatment groups are quite similar to those of Dave’s. My best advice would be that if you find yourself on a treatment themed Facebook group and see nothing but glowing anecdotal reports and only “facts” that back up these claims, colossal alarm bells should go off in your head. It’s vitally important that you actively seek alternative viewpoints to get a complete picture of whatever treatment you are investigating. Facebook may be a good starting point but should most certainly not be your only source of MS information, or any information for that matter. Always remember, you can learn much more from people you don’t agree with than from those you do. And that goes for all aspects of life, not just medicine.<br>
<br>
As far as Facebook’s general MS support groups are concerned, they’re much better than groups purporting to dispense reliable medical info. Still, for support and camaraderie, I personally prefer some of the online MS communities listed above.<br>
<br>
I hope WK readers find this roadmap to the MS Internet useful. If I’ve missed any sites that are your personal favorites, please let me know about them in the comments section of this post.<br>
<br>
As is my predilection, I’ll leave you with a little musical ditty reflecting my feelings on much of the medical info that can be found on Facebook: “Beware,” by the great Louis Jordan. Yes, some of the sentiments expressed in the lyrics are archaic, but remember, the song was written over 60 years ago and was just meant to be fun. This is a classic example of the “Jump” genre of music, sometimes also called “Stomp,” which was a direct precursor to early rock ‘n’ roll…<br>
<br>
<center>
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/Yl3XTX8JnQo?rel=0" width="560" id="id_95eb_c92_d1f4_551f"></iframe></center>
The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com10tag:blogger.com,1999:blog-3605254543761446258.post-51884425986621234342017-08-25T01:41:00.001-04:002017-08-25T03:17:07.087-04:00 Me, Myself, and MS<i>(The Multiple Sclerosis Association of America asked me to write a guest post for their blog, MS Conversations, on the subject of MS and relationships. This is the essay I wrote for them. Please check out the MSAA's website (</i><a href="https://mymsaa.org/" id="id_be8e_222c_810f_7d23" target="_blank">click here</a><i>) which offers a wealth of info on all aspects of the disease, and&nbsp;</i><i>material and financial&nbsp;help to MS patients in need. &nbsp;Also visit their blog, which features posts from many different writers (</i><a href="https://blog.mymsaa.org/" id="id_1a3f_e332_33e1_3afe" target="_blank">click here</a><i>). The MSAA is a terrific organization, and I hope you'll take some time to get to know them.)</i><br />
<em></em><br />
<div>
<div>
<img alt="" id="id_d4c6_a3d5_f6e9_9662" src="https://lh3.googleusercontent.com/-Bl15-seus2g/WZ-4d30g8UI/AAAAAAAADq8/7V0cwza1MIwamVnXBNwQ2OyfT2voyMF2gCHMYCw/s5000/%255BUNSET%255D" style="display: block; float: right; height: auto; margin: 4px; width: 185px;" title="" tooltip="" /><br />
<div>
Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”</div>
<div>
<br /></div>
<div>
Among the countless aspects of life impacted by the MS are relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.</div>
<div>
<br /></div>
<div>
Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being.&nbsp;</div>
<div>
<br /></div>
<div>
Nothing defines the notion of mortality more sharply than being diagnosed with&nbsp;a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.</div>
<div>
<br /></div>
<div>
For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche.&nbsp;</div>
<div>
<br /></div>
<div>
When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made&nbsp;here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs&nbsp;for the illumination of self-awareness. As the Persian poet Rumi wrote, the wound is where the light enters.</div>
<div>
<br /></div>
<div>
MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those&nbsp;adornments&nbsp;often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world? <br />
<br />
I discovered facets of my personality that had been long neglected, and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.</div>
<div>
<br /></div>
<div>
Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns and rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within.</div>
<div>
<br />
<br /></div>
</div>
</div>
The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com30tag:blogger.com,1999:blog-3605254543761446258.post-10317856968335196612017-07-30T23:17:00.000-04:002017-08-03T03:48:05.603-04:00Transabled<div class="separator" style="clear: both; text-align: left;">
<a href="https://1.bp.blogspot.com/-s6Pk6vmHQzc/WX6bBybKR-I/AAAAAAAADqM/i4BP0R50ZRg5S5VYl6-WKdxTPbpw8plLQCEwYBhgL/s1600/inseguranca-muchomacho-naconquista.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="283" data-original-width="350" height="258" src="https://1.bp.blogspot.com/-s6Pk6vmHQzc/WX6bBybKR-I/AAAAAAAADqM/i4BP0R50ZRg5S5VYl6-WKdxTPbpw8plLQCEwYBhgL/s320/inseguranca-muchomacho-naconquista.gif" width="320" id="id_a075_1c7d_1eb1_12e7" style="width: 320px; height: auto;"></a>An able-bodied friend and I recently discussed the swirl of issues surrounding transgender people, spurred by the President’s sudden tweeted edict banning transgender volunteers from serving in the military. My friend expressed mixed&nbsp;thoughts on these matters, most of them based on the fact he just couldn’t identify with a person feeling they were somehow born into a body of the wrong sex. I replied that I too couldn’t entirely relate to the emotional state and cultural pain experienced by transgender folks, but my feelings should have&nbsp;no bearing on issues of fairness and equality. If all people are indeed created equal, any person's standing as an equal should not rely on my ability to fully grasp the intricacies of their circumstances.</div>
<br>
As those thoughts turned into words and left my lips, the realization hit that in many respects I can identify with at least some of the feelings I expect transgender people experience. I’m in no way equating my own situation with theirs, but thanks to Creeping Paralysis the inner me is now almost entirely divorced from the body in which it exists. I’m not transgender, but I am transabled.<br>
<br>
My concept of “me” is still that of the wiry six-footer that I used to be, the mannish boy who reveled in meandering strolls through the city, long-distance swims, a vibrant social life, and a full tapestry of sensual and tactile delights. The self I hold dear bears no relation to the embodiment of decrepitude that confronts me whenever I glance down and take a gander at the frame that sits in my wheelchair. The image staring back at me when I muster up the courage to roll up to a full-length mirror and take a peek is a complete stranger, at least from the neck down. With its bloated belly and ravaged limbs,&nbsp;that thing in the chair is most emphatically not the me that dwells inside of it. The old me lives on, cocooned in my heart and soul, trapped within a penitentiary of increasingly useless flesh and bone.<br>
<br>
Though I try my best to quiet the frenzied feelings engendered by this gaping disconnect between body and spirit, at times there is simply no denying the emotional tempest raging within. Confusion, anguish, sadness, a gnawing yearning for what used to be – negative energies all, especially when directed inward. And though I try my best to silence or at least contain them, these destructive emotions seek out seams and points of weakness through which to burst, like grasping fingers of flame blasting through an apartment building window, threatening a conflagration that will take down the entire edifice. Thus far my attempts at emotional alchemy, seeking to turn negative energy into positive, have helped neutralize the threat, but the potential for self-immolation always lurks within.<br>
<br>
As a transabled person, I often find myself an alien on my own planet, a victim of a variety of discriminations. Outside the cozy confines of my home, there are bathrooms I can’t use, restaurants and shops that apparently don’t want me as a customer, and passersby to whom I appear to be invisible. Indeed, maybe even something worse than invisible, a threat, a reminder of the ephemeral nature of their own sense of normalcy, a not-so-subtle hint that the supposedly solid foundations of their lives are in fact made of nothing more than gossamer.<br><br>
The New Testament warns us to judge not, lest ye be judged. As members of a society increasingly riven by social and political divides – largely manufactured by would be puppet masters who seek to gain wealth and power by exploiting the very fissures they have created – it should be contingent upon every individual to live those words as a matter of personal and national survival. It’s far past time to reject outright the prefabricated outrage bombarding us and not fall prey to manipulators who have nobody’s good at heart but their own. We are all in this together, black or white, gay or straight, abled or transabled. If we allow the cracks in our society to further widen, we may all too soon find out what lies at the bottom of the abyss.<div>
<br>
To my fellow transabled people I can only offer the same advice that I try to follow myself; make every effort to channel the despair and outrage you feel over being trapped in an increasingly unrecognizable body into some sort of positive force. As the great Johnny Lydon stated, anger is an energy. For your sake and the sake of your transabled brethren, make every effort to direct that energy outward, to vent it in some sort of constructive way if only to not let it combust within you. Cry out against a multiple sclerosis status quo that has made treating but not curing somehow acceptable, confront a medical industry that obscenely sees us first not as patients but as consumers, and offer comfort and understanding to those similarly afflicted.<br>
<br>
To the transgender community, I tender my support, as somebody who is now experiencing the turmoil of being transabled. Although we may not live in the same house, I believe we might reside in the same neighborhood. I didn’t choose my circumstances and neither did you. Stay strong.<br>
<br>
<br>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;" id="id_daa_8fb_7737_b34a"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-wePiS5JckqI/WX6bFSvrYDI/AAAAAAAADqQ/HQC5xlWehdotq6IbvEIlfYzekDBHKojjgCEwYBhgL/s1600/Jameson_celebration%252B%25282%2529.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1000" data-original-width="1000" height="200" src="https://2.bp.blogspot.com/-wePiS5JckqI/WX6bFSvrYDI/AAAAAAAADqQ/HQC5xlWehdotq6IbvEIlfYzekDBHKojjgCEwYBhgL/s200/Jameson_celebration%252B%25282%2529.jpg" width="200" id="id_9f25_aaf8_70d2_9541" style="width: 200px; height: auto;"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Celebration-Elizabeth Jameson<br>
Created from MRA image of my brain.</td></tr>
</tbody></table>
My dear friend Elizabeth Jameson (<a href="http://www.jamesonfineart.com/" target="_blank">click here</a>), a disabled person who is far more comfortable with her imperfect body than I am with mine, recently gave the below Tedx talk. Her words and deeds perfectly illustrate the power of directing potentially negative energy outward, thereby forcing it into becoming something positive. Elizabeth’s MS journey found her turned into an accidental artist, transforming MRI images into thought-provoking pieces of fine art. My brain had the honor of being one of her subjects, and the prints she created out of my MRIs reveal that I have a couple of dancers jitterbugging away inside my skull. Thanks to Elizabeth, images of my brain have appeared on the covers of medical journals (<a href="http://www.jamesonfineart.com/news-media/#/neurology/" target="_blank">click here</a>) and textbooks (<a href="https://www.amazon.com/Cognitive-Neuroscience-Biology-Fourth-Edition/dp/0393913481" target="_blank">click here</a>). Though MS has now rendered her quadriplegic, Elizabeth’s radiant spirit and message of everlasting hope come through loud and clear in this riveting and important talk. Enjoy…<br>
<br>
<em>(For those receiving this via email, you can view this video on the Wheelchair Kamikaze website – <a href="http://www.wheelchairkamikaze.com/2017/07/transabled.html" target="_blank">click here</a>)</em><br>
<em></em><br>
<br>
<center>
<iframe allowfullscreen="allowfullscreen" frameborder="0" height="360" src="https://www.youtube.com/embed/VA7KbtclMWk?rel=0" width="640" id="id_618a_946e_9f47_cf35"></iframe></center>
</div>The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com32tag:blogger.com,1999:blog-3605254543761446258.post-56432376097680855172017-07-06T02:24:00.000-04:002017-07-06T03:55:32.316-04:00Hunger Games: Back on the Chuck Wagon<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-oUyT1-wPCzo/WU4JRhiTUXI/AAAAAAAADo4/KyQvx0o8A8kWEsm1yrdcLDHOKDwTAURoACPcBGAYYCw/s1600/skeleton-drinking-beer-art-sculpture-skull-starbucks.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="400" data-original-width="323" height="320" src="https://1.bp.blogspot.com/-oUyT1-wPCzo/WU4JRhiTUXI/AAAAAAAADo4/KyQvx0o8A8kWEsm1yrdcLDHOKDwTAURoACPcBGAYYCw/s320/skeleton-drinking-beer-art-sculpture-skull-starbucks.jpg" width="258" id="id_5636_69c3_c117_dda1" style="width: 258px; height: auto;"></a></div>
I finished this month’s round of the Fasting Mimicking Diet (FMD) last Friday. This time around, in addition to the five-day prepackaged Prolon diet (<a href="https://prolonfmd.com/" target="_blank">click here</a>), I added an extra two days of my own design. I once again found the five day FMD to be surprisingly easy to complete. As was the case last month, the third day on the diet was the hardest but even that wasn’t too terrible, just some hunger pangs and a few wistful thoughts of key lime pie. By the fourth day, though, any feelings of hunger had subsided, and days four and five were a breeze.<br>
<br>
Since things went so well over the prescribed five days, I went ahead with my plans to push the boundaries and extend the length of the Fasting Mimicking Diet with an additional two days of even more draconian dieting. On day six I ate about 25 olives over the course of the day, and drank water and a glycerol based energy drink that’s supplied with the Prolon diet. Because Prolon’s glycerol concoction is mixed with water in amounts depending on the dieter’s weight, I had plenty left over from the previous five days to make up a few more batches for my extended version of the diet. One day’s worth of energy drink supplies about 100 calories, and 25 olives provides another 100, so on day six I consumed a total of roughly 200 calories.<br>
<br>
On day seven I decided to go liquid only, and confined my intake to water and the energy drink. Even so, I felt absolutely no hunger, and the day was actually kind of anticlimactic. Don’t know what I was expecting, but after six days of extremely reduced caloric intake, adding a seventh during which I consumed only 100 calories presented no problems whatsoever. I wasn’t very active, but then again being stuck in a wheelchair doesn’t make for a very physically active lifestyle. Even if I were to drive my wheelchair 10 miles, the effort only requires a modicum of pressure from my left arm and hand. Not exactly a high calorie burning activity, thus the presence of the bowling ball I seem to be concealing under my shirt.<br>
<br>
Speaking of which, over the course of the seven days I lost about 5 pounds, which is exactly what I lost during last month’s five day FMD. I expected to lose more weight given the extra two days of fasting, but for whatever reason my bowling ball seems loath to shrink. I may have to resort to hammer and chisel.<br>
<br>
I broke my fast on day eight with a cheese omelette and a bagel and butter, thinking these items fairly easy to digest. Apparently, my body had other ideas, and about 20 minutes after finishing my meal I was hit with a giant wave of fatigue that forced me to bed, where I crashed for a solid four hours of deep, deep sleep. I suppose after seven days of hardly having to devote any energy at all to digestion, suddenly being confronted with an omelette and bagel gave my body quite the shock, and my “awake” circuit breakers were slammed off in order to muster up the oomph to deal with the introduction of some solid food. Dairy and wheat (gluten) might also have presented my body with some problems other foods wouldn't have, but I've never had a problem digesting either. In any event, lesson learned, I’ll break next month’s fast with a simple fruit salad.<br>
<br>
As for any changes in my disease state, I think it’s still too early to tell. I did have blood tests taken after day five of this month’s FMD, so we’ll see if they show any discernible signs of changes in my body chemistry. At this point I plan on doing the diet for at least two more cycles, tinkering with the formula in consultation with my naturopath.<br>
<br>
Oh, I did reach out to Prolon about discounting their diet kit for patients with chronic illnesses. I was told to send an email to the CEO, which I did but so far have received no response. I’ll try again in a week or so and keep everyone posted if I make any progress in this regard…The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com11tag:blogger.com,1999:blog-3605254543761446258.post-7962853385992305082017-06-24T02:51:00.000-04:002017-06-24T16:55:19.928-04:00The Hunger Games: Starved To Life<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-oUyT1-wPCzo/WU4JRhiTUXI/AAAAAAAADo0/Z7o5_k-s9OY9zxpZNDc5lXAgh__QCAW-gCLcBGAs/s1600/skeleton-drinking-beer-art-sculpture-skull-starbucks.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="400" data-original-width="323" height="320" src="https://3.bp.blogspot.com/-oUyT1-wPCzo/WU4JRhiTUXI/AAAAAAAADo0/Z7o5_k-s9OY9zxpZNDc5lXAgh__QCAW-gCLcBGAs/s320/skeleton-drinking-beer-art-sculpture-skull-starbucks.jpg" width="257" id="id_c901_43a5_b556_6163" style="width: 257px; height: auto;"></a></div>
In keeping with my last post, I figured I'd give the title of this post a little cinematic touch.<br>
<br>
Today (Saturday, June 24) I'm starting another round of the Fasting Mimicking Diet that I did last month. For those who missed&nbsp; last month’s hoopla, I wrote posts recounting each of the five days of the diet, starting with a comprehensive explanation of how’s and why’s of the plan which you can read by (<a href="http://www.wheelchairkamikaze.com/2017/05/the-starvation-chronicles-prologue.html" target="_blank">clicking here</a>).<br>
<br>
I’ll be using the same prefab diet marketed by Prolon (<a href="https://prolonfmd.com/" target="_blank">click here</a>). A few people asked if I’m being sponsored by Prolon, and I promise you, I am not. I understand that the price of the diet kit is prohibitive for a lot of people, and I plan on getting in touch with the company and seeing if we can work out some kind of deal to make the kits more affordable for people with MS who want to try the diet but find the price too steep. Seems like it would make for good publicity for the company and be of benefit to many patients, a classic win-win situation. Meant to do that earlier this month, but, as usual, the days somehow got away from me.<br>
<br>
Just a quick recap of what the diet entails: this is a strict reduced calorie diet, done in the hope (expectation?) that forcing the body into a fasting state will allow it to recalibrate some of the out of whack processes seen in diseases like MS, reduce inflammation, and jumpstart the body’s own stem cells to do some regeneration of damaged tissues. On day one of the diet consumption is restricted to 1150 calories. On days 2-5, this is cut further to 800 calories. The diet consists of prepackaged high nutrient soups, protein bars, kale crackers, olives, and a glycerol based energy drink. Other liquid intake is restricted to herbal teas and water. All of the food provided is vegetable-based.<br>
<br>
Last time around I found getting through the five days surprisingly easy, and instead of feeling weak at the end of the diet, as I expected, I actually felt quite energized. So, this time around I’m going to take an even more draconian approach and try to extend the diet by two days, consuming only the energy drink, water, and herbal tea on days six and seven. I am doing this under medical supervision, and, rest assured, if I find that things aren’t going well during those extra two days, I’ll pull the ripcord and eat a fruit salad. But desperate times call for desperate measures, and my Creeping Paralysis isn’t showing any signs of relenting.<br>
<br>
I was inspired to extend the diet after reading a 2012 article from Harper's, which recounts the long history of fasting for medicinal purposes and tells the tale of the author’s own successful 19 day fast. Incredible stuff. You can read the article by (<a href="https://drive.google.com/file/d/0Bxw58nqGzrFkQUtiTUtYQ005YXc/view?usp=sharing" target="_blank">clicking here</a>). I plan on engaging in at least one more round of the diet after this month, probably more. My naturopath said she’s seen patients start to respond after the second round. Here’s to hoping. I didn't see any additional benefit from the first round other than some lost weight (5 pounds) and a temporary increase in energy levels, but for whatever reason I have found the idea of eating red meat absolutely revolting since doing the diet last month. Go figure.<br>
<br>
For those foodies out there, I chose as my last meal before starting this month’s diet a very yummy Thai dish, crispy duck in red curry sauce with lots of pineapple, lychee nuts, and veggies. One of the great things about living in NYC is that you can get pretty much any type of cuisine delivered right to your door, and the aforementioned deliciousness arrived about 25 minutes after we placed the order online. The wonders of modern technology.<br>
<br>
I’ll not recount every day of this month’s diet as I did last month, but I'll check in again when this cycle is over. Hopefully, I’ll make it through the entire seven days.<br>
<br>
Here’s mud in your eye…The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com14tag:blogger.com,1999:blog-3605254543761446258.post-76090089970232242732017-06-19T02:11:00.000-04:002017-06-19T05:21:31.535-04:00Some Wheelchair Kamikaze Movie RecommendationsAnd now for something completely different… I’ve been hard at work on an MS related article for an online general media outlet, which when finished will also eventually appear on this blog. I was hoping to have the piece done at least a week ago, but I’m finding it difficult to write for a general audience after so long writing specifically for people with direct knowledge of MS. This hurdle combined with the usual Creeping Paralysis crap (weakness, paralysis, fatigue, etc.) have combined to make writing the article something of a tough slog. No worries, though, I’ll get it done, and hopefully the editors of the internet site will find it to their liking.&nbsp;<br>
<br>
In the meantime, I don’t want to leave WK readers feeling abandoned. As my mind is filled with MS related flotsam and jetsam as a result of working so hard on the aforementioned article, I figured I’d go in a completely different direction for this blog post. How about some movie recommendations for others like me who find themselves with lots of time to stare at TV screens due to the vagaries and vulgarities of multiple sclerosis?<br>
<br>
Here, then, are a few lesser-known films that I hope you might check out and find enjoyable/interesting. If any of you have already seen any of these films or watch them as a result of these recommendations, I’d love to know your thoughts about them. Please feel free to leave your own critiques in the comments section, below.<br><br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-YZ-QeKSZjSo/WUdlURyWM4I/AAAAAAAADoM/6CXpwN_zo_gOdHv_9IGyS5DL5xlcgKySgCLcBGAs/s1600/the%2Bdrop.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://1.bp.blogspot.com/-YZ-QeKSZjSo/WUdlURyWM4I/AAAAAAAADoM/6CXpwN_zo_gOdHv_9IGyS5DL5xlcgKySgCLcBGAs/s200/the%2Bdrop.jpg" width="135" id="id_1145_f134_4ed9_a3ee" style="width: 135px; height: auto;"></a></div>
The Drop – This was James Gandolfini’s last film before his untimely death. It’s a modern film noir, centered on a Brooklyn bar that is used by underworld figures as a “drop” for their ill-gotten gains. Though there are a few action sequences, this is more a nuanced character study of the central players, who may or may not be the people we assume them to be when first we meet them. Kind of like life, no? The film features a tremendous performance by Tom Hardy, who I think is one of the finest actors of his generation. Gandolfini also gives a fine performance in his last screen appearance. Fans of The Sopranos – and others who like their films a bit dark and complex, like a zinfandel – should definitely give this one a look.<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-kT9o2nFHCm4/WUdkk_BbRhI/AAAAAAAADoI/OpPbTyAKK5wk-bU0LvoTdYPpE4Bj7nCmwCEwYBhgL/s1600/Patterson.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://4.bp.blogspot.com/-kT9o2nFHCm4/WUdkk_BbRhI/AAAAAAAADoI/OpPbTyAKK5wk-bU0LvoTdYPpE4Bj7nCmwCEwYBhgL/s200/Patterson.jpg" width="135" id="id_3cae_1ee8_8d75_7ef4" style="width: 135px; height: auto;"></a></div>
Paterson – A lovely, quirky film by director Jim Jarmusch, which focuses on the power and beauty of the little things in life; a box of matches, conversations overheard, the simple but simultaneously complex emotional dance that is love itself. The picture gives us a peek into the lives of a bus driver/poet (Adam Driver), his wife (Golshifteh Farahani ), and some of the characters who populate their neighborhood in Paterson, New Jersey. Filled with wonderful poetry (both visual and literary) and an affection for the small details that often go unnoticed, this is a gem that will leave you smiling and thinking about its many facets for quite a while after viewing.<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-7xgqCLTTT48/WUdkk9-sprI/AAAAAAAADoI/tBYGK20KMUkXeQuyhpni0wAlxMOC3IErgCEwYBhgL/s1600/MV5%2B20th%2Bcentury%2Bwomen.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://4.bp.blogspot.com/-7xgqCLTTT48/WUdkk9-sprI/AAAAAAAADoI/tBYGK20KMUkXeQuyhpni0wAlxMOC3IErgCEwYBhgL/s200/MV5%2B20th%2Bcentury%2Bwomen.jpg" width="135" id="id_c92b_cae8_b98a_2e70" style="width: 135px; height: auto;"></a></div>
20<sup>th</sup> Century Women – A kind of coming-of-age story of not only an adolescent boy, but also of the Bohemian adults who surround him. Set in Southern California circa 1979, a period at the precipice of the great social changes that would unfold in the coming decades (the rise of Reaganism, the Internet, the computerization of everything), 20<sup>th</sup> Century Women involves the lives of a teenage boy (Lucas Jade Zumann ) and his mother (Annette Benning), who share a house with several unconventional housemates. Elle Fanning stands out as the young man’s best friend/love interest, and the film hits all the right notes in regards to the time period, the complexities of personality, and the subtle – and sometimes not-so-subtle – emotional skirmishes of both adolescence and adulthood.<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-DtguZ9Lvqo4/WUdklN6SV4I/AAAAAAAADoI/4SDIoXyhhbQruNWa6yIPJUkHQMbUIwZqACEwYBhgL/s1600/hunt%2Bfor%2Bthe.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://2.bp.blogspot.com/-DtguZ9Lvqo4/WUdklN6SV4I/AAAAAAAADoI/4SDIoXyhhbQruNWa6yIPJUkHQMbUIwZqACEwYBhgL/s200/hunt%2Bfor%2Bthe.jpg" width="135" id="id_bfb7_5289_6b76_6692" style="width: 135px; height: auto;"></a></div>
Hunt For the Wildepeople – a fun and funny film from New Zealand about a troublesome teenage boy (Julian Dennison) and a gruff older man (Sam Neill) who inadvertently find themselves the subjects of a national manhunt through the wilds of New Zealand’s outback. A witty script, endearing characters, and the natural beauty of New Zealand combine to make this sometimes silly, sometimes seriocomic film a deliciously diverting watch, one with a few laugh out loud moments, some over-the-top action sequences, and lots of heart. Not a film that reaches for profundity, but if you’re looking for some offbeat entertainment, Hunt For The Wildepeople will fit the bill nicely.<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-T5XGP7P_1ac/WUdkk1mDVNI/AAAAAAAADoI/xGBv7Ore2rk3sZOTu33gtN9dH4wko5gLQCEwYBhgL/s1600/green%2Broom.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://2.bp.blogspot.com/-T5XGP7P_1ac/WUdkk1mDVNI/AAAAAAAADoI/xGBv7Ore2rk3sZOTu33gtN9dH4wko5gLQCEwYBhgL/s200/green%2Broom.jpg" width="135" id="id_a353_5e9a_51ca_d7ef" style="width: 135px; height: auto;"></a></div>
Green Room – I’m a big fan of horror films, but not the kind that feature ghosts, demons, or other supernatural creatures. Human beings can be horrific enough. Green Room finds a young punk rock band on tour in their dilapidated van far away from home, with money and patience running desperately short. The band inadvertently picks up a gig at a Nazi skinhead club, where they stumble upon a murder. Let’s just say the things go downhill from there. Patrick Stewart is terrific as the elder patron and leader of the skinhead crew, and the film is packed with tension, anxiety, and plenty of adrenaline inducing moments. I classify this as more of a thriller than a pure horror flick, though it does contain some gore. Definitely recommended for fans of the genre.<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-WvvnejV3g3c/WUdklCwPG5I/AAAAAAAADoI/S00lOaWXdJEMJf2nCpb6iLw-5JCcU5j-ACEwYBhgL/s1600/irreversible.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="182" height="200" src="https://3.bp.blogspot.com/-WvvnejV3g3c/WUdklCwPG5I/AAAAAAAADoI/S00lOaWXdJEMJf2nCpb6iLw-5JCcU5j-ACEwYBhgL/s200/irreversible.jpg" width="135" id="id_4249_9d5f_7ba0_26c" style="width: 135px; height: auto;"></a></div>
Irreversible – perhaps the finest product to come out of the “French Extreme” movement, 2002’s Irreversible is an unforgettable film that is definitely NOT for everybody. Over the last few decades the French have stretched the boundaries of the horror/thriller genre, with a number of films that leave nothing to the imagination but also, at their best, plumb the depths of the human experience. Irreversible depicts the events of one extremely tragic night in Paris, in reverse chronological order. In other words, the film starts with the ending credits, and the night’s sequence of events plays out backwards, last to first. Each sequence of the film is shot as a single take with no cuts, and the camera work by director Gaspar Noé is as spectacular as it is unsettling. A terrific cast (Monica Bellucci, Vincent Cassel, Albert Dupontel) thoroughly inhabit the film’s largely ad-libbed script and make the events portrayed all the more gut wrenching. As the film spools out, some of our initial assumptions about the characters are turned on their head, and Irreversible is a cinematic experience that will impact you for days if not weeks afterwards. Again, this film is not for everybody; in fact, when screened at Cannes, large parts of the audience walked out during its jarring first 40 minutes. Those who remained were said to have sat in stunned, heartbroken silence for quite a while after it ended. The film graphically portrays terrible violence as well as graphic sexual acts, and contains an extended rape scene that illustrates the full, unremitting horror and unspeakable cruelty of that crime. It also contains one of the sweetest love scenes on film. That said, Irreversible is among the most exceptional pieces of cinema I’ve experienced. The violence portrayed is key to the film’s ultimate power, but again, Irreversible is not for those even slightly squeamish, or who might have personal issues with the events portrayed. But for viewers up to it, Irreversible offers an unforgettable cinematic experience.<br><br>
<br>
I've also watched a whole bunch of the campy B-movie 70s horror flicks I so love (I Drink Your Blood, I Spit on Your Grave, etc.), but I know that flicks like these aren't everybody's cup of tea. Depending on what country you live in, most of the above recommended films are available on the popular streaming movie services (Netflix, Amazon Prime, Hulu). Again, I’d love to get readers' impressions of these films, as well as any recommendations of your own, in the comments section below. I’ll be back with our regularly scheduled MS related content in the next few weeks. In the meantime, happy viewing!The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.com20